psoriasis

1 Comment Posted on August 5, 2014 Arthritis, autoimmune conditions, Fundraising

National Psoriasis Awareness Month – Five things you need to know about psoriasis.

Psoriasis Awareness

August is National Psoriasis Month. Run by the National Psoriasis Foundation is run every year for the whole month. Among other things they run a great blogging section called http://services.psoriasis.org/treatment-tips/it-works-for-me/ which actaully provides tips for living with Psoriasis. Do check it out!

At PatientTalk.Org we like to support different healthcare related awareness months and this is no exception. A slight change in tacj we thought we would produce a blog post outlining five thinks you need to know about psoriasis!

So what actually is psoriasis? We have share these five basic facts about psoriasis which we would like to share.

1) Psoriasis is a chronic (long term), (and happily) noncontagious autoimmune disease that presents on the skin. It occurs when
the immune system sends out the wrong signal which in turn increase the rate of growth cycle of skin cells.
2) Psoriasis is the autoimmune disease with the highest prevalence in the USA with an estimated 125 million people worldwide live with psoriasis. That’s nearly 2% of the world’s population!
3) Plaque psoriasis is the most common form of the disease, affecting 80 percent of those with
psoriasis. It appears as raised, red patches of skin covered by silvery, white buildup called scale.
But there are other types of psoriasis as well these include :
o Guttate psoriasis: Small dot-like lesions
o Pustular psoriasis: White blisters surrounded by red skin
o Inverse psoriasis: Occurs in armpits, groin and skin folds
o Erythrodermic psoriasis: Intense shedding and redness of skin
4) Psoriasis may appear anywhere on the body, but normally occurs on the scalp, knees, elbows
and torso.
5) The causes of psoriasis are still unknown. Both genetics and external factors known as triggers play a
role in the development of the disease. Triggers include: injury to the skin, infections, stress and sometimes adverse reactions to other treatments.

1 Comment Posted on July 14, 2014 Arthritis, medical awareness

Psoriasis Awareness – I support Psoriasis Awareness

Psoriasis Awareness

In the case of an old friend from university his psoriasis is triggered by stress. While mild it can still cause him serious discomfort.

Which is why I’ve decided to publish this brilliant psoriasis awareness butterfly from Donnee Spencer.

It would be great if you could like and share to help us raise awareness of psoriasis.

If you have any useful links regarding psoriasis and Psoriatic arthritis please feel free to share in the comments section below.

Thanks in advance.

Leave a comment Posted on June 30, 2014 Arthritis, autoimmune conditions, Patient Talk, Research

Are Psoriasis Patients being failed by healthcare providers? Find out more in our interview with Dr Anthony Bewley

New data just released today show that huge numbers of people with psoriasis

Psoriasis

are being managed with repeat prescriptions and are not going to see their GP to discuss their treatment. Not accessing the best advice and treatment could leave these patients on out-of-date treatment regimens, and potentially at risk of long-term health problems,² frustration, stress and unhappiness.³

Half of the psoriasis patients questioned were on a repeat prescription,³ locking them into a cycle of poor disease management.When asked about their repeat prescriptions, almost one third of patients felt at a disadvantage because they felt they had less opportunity to speak with their GP or try other treatment options to help them manage better.¹

Psoriasis is a common condition affecting 1.8 million people in the UK.⁴ More than just a dry skin condition, psoriasis is a chronic immune disease that affects patients over a number of years, sometimes from childhood.⁵ Psoriasis is associated with an increased chance of developing other serious conditions such as psoriatic arthritis, heart disease, high blood pressure, diabetes and some cancers.^2,5,6,7 The condition can also have a significant physical, psychological and social impact on sufferers, and can limit their work opportunities and income.⁸

The significant burden of the condition, its health risks, and the associated discrimination experienced by patients have recently (May 2014) been recognised by the World Health Organization in the form of a historic resolution on psoriasis. The resolution aims to combat the stigma attached to psoriasis, improve disease information and improve patient access to care.⁹

Psoriasis 2

The Psoriasis: Think Twice campaign was created to address the significant patient need and is supported by a Working Group of experts in the field of psoriasis care. The Working Group contains patients and healthcare professionals, including a Clinical Psychologist, Pharmacist, GP, Medicines Manager and Consultant Dermatologist, as well as a representative of the British Dermatological Nursing Group and the Primary Care Dermatology Society.

As well as a massive impact on a patient’s well being and quality of life, poorly managed psoriasis also has huge financial implications. A LEO Pharma survey showed that 80% of people with psoriasis buy over-the-counter products as well as their prescription to try and improve their symptoms.¹⁰ In addition to the burden faced by patients, poor control of chronic conditions such as psoriasis also costs the NHS an estimated £500 million per year in resulting complications and additional medical interventions.¹¹

Championed by psoriasis patient Jessica Gough, Psoriasis: Think Twice equips people with psoriasis with the tools and information they need to talk to their doctor about the physical and psychological impact of their condition. Psoriasis: Think Twice will help patients think twice about what they can be doing differently, and how they can access the benefits of a review – allowing them to take ownership of their care.

PatientTalk.Org have interviewed Dr Anthony Bewley to created a Psoriasis FAQ. Dr Anthony Bewley is Dermatology Consultant with a special interest in Psoriasis.

What is psoriasis?

Psoriasis is a largely genetic condition. You’re born with the likelihood to get psoriasis and then certain things can trigger it, like stress or even something like a sore throat.
What causes it?

We don’t really know what causes psoriasis. We know it’s a complex interaction between skin and the nerves in the skin and the immune system in the skin. And that’s why people who get psoriasis often find that stressful life events seem to trigger the psoriasis.

How can it be treated and with what kind of success?

The aim of treatment is to get the patient as clear as we possibly can. We know that we can’t

Psoriasis 3

cure psoriasis because it’s a genetic condition but the aim is to get the patient as cleared as they want to be and usually we can get the patient completely cleared of their psoriasis. The treatment that we have available for psoriasis we try and tailor to the needs and the lifestyle of the patient. That can include creams, photo-therapy, which is ultra violet light treatment, or tablets or injections. What we know is that there’s lots of new things that appear regularly that we can treat our patients with, so there are always advances in the management of psoriasis.

What impact does is have on lifestyle?

We know that living with psoriasis matters hugely for our patients. It really affects their self-esteem and their confidence. Some patients feel depressed or anxious – or both – when they get psoriasis and unfortunately some people feel so isolated and fed up with it that they consider suicide.

Is the current provision adequate to meet the patients’ real needs?

We always think as healthcare professionals that we can do more. And that is certainly the case. All too often I have patients who tell me they’ve been to see a healthcare professional and they’ve been told it’s just psoriasis, it’s only your skin. And I think that’s unacceptable. We’ve got lots to learn from our patients, and I think that things are being done to improve the care of patients who have psoriasis. There are newer treatments being made available every year and greater ways of supporting patients who have psoriasis.

How well trained are HCPs and what is the quality of the support they provide?

Healthcare professionals are aware of psoriasis but the training in primary care, in management of skin disease is not very good. The training that you get in medical school and after medical school in the management of dermatological conditions is not particularly great. That’s being addressed by organisations such as my own – The British Association of Dermatologists – but even then there is lots to learn from healthcare professionals about how to manage patients with psoriasis.

Why are patients being failed so badly?

I don’t think patients are being failed necessarily. It’s just that are things that we can do better and there are things that we can do more of. My message to patients who live with their psoriasis is first of all, don’t suffer in silence; access healthcare professionals. There are things that can be done for your psoriasis.

What other forms of support are available for healthcare professionals and patients?

What healthcare professionals need to do is to first of all make sure they are trained in how to look after patients with psoriasis. And there are training modules that you can access as a healthcare professional, either through post-graduate centres or online. Psoriasis patients can access support group information from organisations such as the Psoriasis Association and there is also a new website that myself and a group of people, with the help of LEO Pharma, have generated which is called www.psoriasisthinktwice.co.uk where the aim is to try and empower patients so that they can get the most from their consultations with their GP.

About psoriasis

Psoriasis is a common condition that affects between 2% and 3% of the UK population, or 1.8 million people. Psoriasis affects males and females equally and can affect a person at any stage of their life. Psoriasis is an immune condition, which causes symptoms on the skin and sometimes the joints. More specifically, it is the build up of skin cells which form raised ‘plaques’ on the skin causing flaky, scaly, itchy patches.^4,5

Psoriasis: Think Twice surveys

Two surveys were conducted to generate the Psoriasis: Think Twice data. A survey of 2,067 members of the general public investigated personal attitudes towards medicines usage and repeat prescribing, while a survey of 501 adult psoriasis patients addressed specifics regarding the management of their condition. All 501 psoriasis patients interviewed were being treated by a GP and currently receiving a topical treatment. The sample size was identified and validated by an independent market research company as a robust sample based on the total number of people with psoriasis in the UK.

Key survey findings:^1,3

1/3 of psoriasis patients haven’t had treatment reviewed for at least five years
1/2 of psoriasis patients are on a repeat prescription
Almost 60% of psoriasis patients on a repeat prescription felt at a disadvantage
Only just over 1 in 10 patients have their treatment reviewed by their GP when they need a new prescription

Psoriasis: Think Twice Working Group

Psoriasis: Think Twice was developed with the support of a range of experts involved in helping people with psoriasis, including a dermatologist, pharmacist, nurse and GP. By working with representatives from groups such as the the British Dermatological Nursing Group and the Primary Care Dermatology Society, Psoriasis: Think Twice will equip patients with the tools and information they need to take control of their disease.

QualityCare^TM

In addition to Psoriasis: Think Twice, LEO Pharma has developed The QualityCare^TM Psoriasis Patient Support Services, a free, multi-channel programme designed to help people with psoriasis to play an active role in managing their condition, regardless of whatever treatment they are using, and in collaboration with their health care professionals.

Individuals using the QualityCare^TMPsoriasis Patient Support Services receive personalised support via a range of different channels, including online, text messages, and emails. Personal profile data are processed by an electronic system and the support content is tailored to the individual. When an individual’s profile changes, so does the support.

WHO Resolution on Psoriasis

For more information visit: www.ifpa-pso.org

References:

Opinion Matters Survey, Patients with Psoriasis Receiving a Repeat Prescription, LEO Pharma data on file, May 2014
Ahlehoff O, Gislason GH, Charlot M, et al. Psoriasis is associated with clinically significant cardiovascular risk: a Danish nationwide cohort study. J Intern Med. 2011;270(2):147-157
Opinion Matters Survey, Patients with Psoriasis, LEO Pharma data on file, May 2014
The Psoriasis Association. (2012). About Psoriasis. Available: https://www.psoriasis-association.org.uk/. Last accessed 02 May 2014
Schön MP, Henning Boehncke W. Psoriasis N Engl J Med 2005; 352(18): 1899-912
6. Pouplard C, Brenaut E, Horreau C et al. Risk of cancer in psoriasis: a systematic review and meta-analysis of epidemiological studies. J Eur Acad Dermatol Venereol 2013; 27(Suppl. 3): 36–46
Pariser DM, Bagel J, et al (2007). National Psoriasis Foundation clinical consensus on disease severity. Arch Dermatol; (143), 239-42.
D Butler, R Gupta, E Levin, M Huynh, A Leon, J Koo. (2013). Psoriasis and quality of life. Hong Kong J. Dermatol. Venereol. . 21 (1), 64-68
1. UK Burden of Psoriasis and Treatment Survey, LEO Pharma data on file, July 2011
2. Trueman, P., Taylor, D.G et al (2010). Evaluation of the scale causes and costs of waste medicines. Report of DH funded national project. York: 1. York Health Economics Consortium

Images are published with the permission from the New Zealand Dermatological Society Incorporated (or dermnetnz.org).

Leave a comment Posted on October 28, 2013October 28, 2013 Patient Talk

World Psoriasis Day – please like and share this page to help us raise awareness of life with Psoriasis

Tuesday 29th of October is World Psoriasis Day.

Please like and share to help us raise awareness of psoriasis.

For more information on the day please go to http://www.worldpsoriasisday.com/web/page.aspx?refid=10

World Psoriasis Day

18 Comments Posted on September 26, 2013July 3, 2017 Patient Talk

Autoimmunity! What actually is an autoimmune medical condition? Updated with reader comments

Autoimmune disease awareness

On PatientTalk.Org we run an occasional series of blogs which try to bust the jargon used in the healthcare and medical industries. In today’s blog we are turning our attention to autoimmune conditions.

Autoimmune conditions are, to say the least, very unpleasant. Importantly they do not just appear in humans but in fact, in most organisms. Simply put autoimmune conditions are when the body fails to recognise one of its constituent organs as part of itself. This leads the immune system to, in effect; attack its own body or part of the body. This will often “present” as inflammation.

There are two main types of autoimmune disease:-

a) Systemic. This is where the sufferer’s immune system attacks the whole body. Lupus can be an example of this. To find out more about Lupus please see our awareness blog https://patienttalk.org/?p=270.

b) Localised. This is typically when an attack is made on a specific organ of the body. In the case of Celiac disease (https://patienttalk.org/?p=349) which affects the gastrointestinal organs or tissue.

Typical symptoms and signs of an autoimmune disease can include:-

1) Pain in either joints or muscles.

2) Fatigue.

3) Brain fog or cognitive impairment.

4) Numbness in the body’s extremities such as hands or feet.

5) Reoccurring rashes or hives.

Obviously if you suffer from any of these symptoms it is vital you see a doctor as soon as you can.

Interestingly autoimmune conditions occur more often in women than men. Indeed it has been estimated at up to 50 million Americans suffer from one kind of autoimmune condition or another.

There is, as of yet, no full list of autoimmune conditions but certainly they run into hundreds. These include multiple sclerosis (https://patienttalk.org/?tag=multiple-sclerosis), rheumatoid arthritis (https://patienttalk.org/?tag=rheumatoid-arthritis), psoriasis, Hashimoto’s thyroiditis, Graves’ disease, idiopathic thrombocytopenic purpura, and Addison’s disease.

Do you suffer from an autoimmune condition? If so it would be great to hear your story! You might want to consider some of the following questions:-

a) What autoimmune condition have you been diagnosed with?

b) What were your original symptoms?

c) What treatments did you use? E.g. Steroids. How effective were these treatments?

d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition?

Please feel free to tell your story in the comments box below.

Many thanks in advance.

NicoleGoulemas	I have been diagnosed with rheumatoid arthritis. It started when i was 20. I just had a sore knee. Then 3 days later i had 2 sore knees. Went to the doctors and they gave me anti inflammatories. I went back a few weeks later with a sore jaw and he suspected arthritis so referred me to a specialist after doing a blood test which came back clear. The wait to see the specialist was around a year and in that year i went downhill fast. I lost my job because i took 3 days off in my probation period with a medical certificate. Their reason was i was unreliable. I spent most days in bed because i couldnt walk. Which took a toll on my relationship because i was unable to do household chores. My relationship ended and i moved back into my mums house where she became my full time carer. She prepared my meals and precut my meat (when i could eat it) by this stage (maybe 5 months) i had 2 sore knees, a sore ankle, a sore jaw that stopped me from eating and talking most of the time because i couldn’t open my mouth, a sore elbow and my hands had started to close up and i couldnt grip a knife or my hair brush. I had gone into a wheelchair coz it was too painful to walk and mum had to help me with personal care as well as cutting all my meals and having them prepared so all i had to do was reheat coz she still had to work. I got quite depressed as well. After my 21st i eventually got in to see the specialist who did more tests. It turned out i had seronegative rheumatoid arthritis. It didnt show up in a normal blood test so they did some other blood tests and found it. My arthritis is worse in the warmer months so I’m a little back to front. My gp had me on a mix of pain killers and anti inflammatories until i got into see the specialist. They then stopped the painkillers and started me on methotrexate and anti inflammatories with prednisolone. I was able to get out of the wheelchair and walk again and then my hands returned to normal. I still had pain and a lot of it. They then introduced another medication (i cant remember what one now) and it didnt work so they put me on arava with the methotrexate. The arava gave me a bad allergic reaction and i was hospitalized for 5 days. After that i was on methotrexate and sulfasalazine for the next 5 or so years. After about 3 years i kept feeling very sick. I told my specialists (each year i got a new one) and they didnt really do much to help. I complained for 2 or more years about it until one listened and i got in to see a biologic rheumatologist. The biologic rheumatologist was also the dr who diagnosed me when i was 21. So it was nice to see a familiar face. I started taking humira that stopped working after a knee arthroscope. I then got put on enbrel that i was allergic to and now im on actemra infusions and they work. Ive been on them for about 2 years now. Through all that i have been on and off prednisolone as well. It was a very long and bumpy road to finding a treatment that worked. I am a new person now and i can even work again. Some days are hard to work as i work in retail which was probably not a smart choice haha. I still battle fatigue and brain fogginess especially after a long day at work and sometimes i have to just sit in the car because i hurt but it doesnt last long because my meds work so after a good nights sleep i am ok again the next day. Advice i can give is never give up. It may be a long hard road to finding treatments that work but dont give up. The road will make u stronger and when u look back on where u have come from u will be proud of yourself. Every small victory gets u closer to the biggest victory, meds that work and a happier life. It may seem like there is no light at the end of the tunnel but it does come trust me. Its a hard depressing battle but when u can get back to work and have a better life it will have been worth the fight. And get a good support network. If anyone is negative get rid of them from your life for a while or permanently. Try to stay positive and go easy on yourself. If u need help ask for it. Dont feel bad if u cant get out of bed things will get better when u find the right treatment.
Mser1986	I can remember as far back as age thirteen or fourteen of having pain and weakness in my feet and legs. Sometimes I would cry from the pain. Playing volleyball was very hard on me but I loved the game. As I got older the pain and weakness got worse. My first hospital stay was when I was twenty two. I was there for about two weeks before the doctors decided that they didn’t know what was wrong with me. I was hospitalized a few more times before my doctors told me that I needed to see a psychiatrist that it was all in my head. My dad had to help me walk out of the hospital. Then an elderly neighbor told me about a MS specialist near my home to see. That was in 1987 the year I was diagnosed. When I finally found out what was wrong with me, I was relieved. I had a name for what was wrong with me. My new normal has me taking life one day at a time. Pain, weakness and fatigue are a part of who I am. But it does not define who I am. When I’m tired I lay down. When I feel MStrong I babysit my one and two year old grandsons. They are a huge handful but I love it. I’m from a family of thirteen children. I have six children and ten grandchildren. My advice would be this: take one day at a time, own your MS diagnosis, don’t let it own you. If you feel fatigued, then lay down and rest. YOU DONT OWE ANYONE AN EXPLANATION. Live life don’t wait till you feel better, that may never happen.
Sweett588	I was diagnosed with RRMS ( relapsing remitting multiple sclerosis ) in 2004. My neurologist now thinks it has progressed into Secondary progressive ms. I did not come out out my last relapse even after IV steroids ( solumedrol) and a month of prednisone. My original beginning symptoms were difficult to diagnose. They were numbness in fingers/ toes. Tingles/ electrical like impulses in my lips especially, but throughout my body. Weird sleep paralysis. And MAJOR fatigue. I was initially told by my family doc I had anxiety and given anti anxiety meds!!! But I knew something was not right with my body. I got an MRI and it showed 5 lesions on my brain, although my spinal tap came back negative. I had a 2 1/2 year old son , and we wanted 1 more child after I made sure it was safe. No one in my entire family either side has ever had MS. I had another child in 2006. Then I started Rebif. I immediately had an allergic reaction. Couldn’t breath! Switched to copaxone. I’ve been on copaxone ever since. I tried Tecfidera briefly after studying it during trials, but once it was clear it causes PML I went back to copaxone 3 x a week. I am JVC positive. My one piece of advice would be to study each drug carefully. They all have terrible side effects! Pick what is right for you. Start ASAP. STAY ON IT. SEE NEUROLOGIST MONTHLY AND GET BLOODWORK REGULARLY! Eat well also!

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RobynSmith1980	I have Mixed Connective Tissue Disease(MCTD). I was diagnoised in 2003, after I had my second child. MCTD is lupus, RA and one other autoimmune rolled into one. Some days I flare with lupus others with the RA. I have been on a whole bunch of medicines and hate taking them. Currently I am taking CIMZIA for the RA, that seems to be helping. I should also be taking methodrexate, planquienl, folic aicd, mutlivit. and I also suffer from depression. I take abilify for the depression sometimes. I am the only one in my family that has been dx with MCTD so I don’t know where I got it from. At first the drs thought that I was crazy saying that this hurts and that hurts, but finally my internal medicine (PCP) did some tests and said I think this is what you have. It was an eye opening for me. I had my third child and when I went to the rheu after she was born they told me that I should not have had her, because of my MCTD. Well my previous rhue did not tell me that! I was furious but glad to have her. I had a host of other medicial issues with the third child and it seemed to be never ending. But now I can say that I am much better. I do have to pace myself and make sure that I dont do to much and get plenty of sleep.
CindiBootheHancock	I have had M.S. for 34 yrs. My father, his first cousin, me, my daughter, my sister..we all have it. There may be more in my family I don’t know about. a) What autoimmune condition have you been diagnosed with? Multiple Sclerosis b) What were your original symptoms? The first symptom I remember was my hands not working to fasten my oldest daughter’s stroller strap. You remember, those that had the two circles? Was 34 yrs ago. Then when I was pregnant with my second child (born in 1981) my legs kept going paralyzed! Doctor kept saying it was because of the baby! But it continued after his birth. Then when he was 5 months old (late 1981) my feet were going numb but tingled up to the midcalf. Doctor finally said he wanted me to have tests for M.D. Yes, he knew MY father had M.S. but remember that back then it was NOT hereditary at all. And was considered terminal. I knew what was coming and said NO! So I did NOT get officially diagnosed till 1992 when I HAD to because I suddenly could not walk and one arm went dead. Yup was M.S. My eye doctor saw the symptoms in 1982. c) What treatments did you use? There were times I used Steroids for some symptoms. I tried Rebif. How effective were these treatments? Steroids, now I will not. They mess up my eyes. Rebif I had terrible injection site reactions, got depressed, had the flu, cold, bad fatigue. For 6 months. Then I said to heck with it and decided taking a med that I had to take meds for the symptoms….not cool. I quit. Now I take COQ10, B complex, ibuprophen, Vitamins E/D, iron, potassium, fish oil, and a multivitamin. As long as I take them regularly, get enough sleep, avoid stress when possible and don’t over due, no one can tell I have M.S. When I last saw my neuro he said “NO ACTIVITY” Don’t stop what ever I am doing! First time in 30 yrs I heard those words! I ALWAYS had active lesions! d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition? Get doctors you trust, do your own research. DON’T STRESS!! And take care of YOURSELF….no one else will do it for you! And if your support system won’t support you, GET ANOTHER ONE!
DaphneRoberts	greetings everyone. i have multiple sclerosis and have been dx since 2002. it happened shortly after i had my third son with a recurring blind spot in my right eye, but this time it did not leave. i had been trying to find out what was wrong with me since i was twelve. i had recurring blind spots, but because i was born with congenital cataracts, they mis-dx me with glaucoma for years. i would get terrible tingling and pain in my legs, extreme fatigue in the summer, numerous headaches and so on and so forth. they couldn’t find anything wrong so they said i was just a hypochondriac. it wasn’t until my son was born that the scars actually showed up. i take Copaxone, baclofin, and an anti-depressant for the attacks and pain. i was taking steroids, but all of a sudden my body has had a very bad reaction to them. if i could give any advice, it would to be your own advocate and be kind but be assertive. it is after all your body and no one knows it, even the drs, like you do. if no one listens or disregards you keep at it, keep reminding them, and keep telling them. be persistent while being kind. God bless you all daphne roberts

RobynSmith1980	I have Mixed Connective Tissue Disease(MCTD). I was diagnoised in 2003, after I had my second child. MCTD is lupus, RA and one other autoimmune rolled into one. Some days I flare with lupus others with the RA. I have been on a whole bunch of medicines and hate taking them. Currently I am taking CIMZIA for the RA, that seems to be helping. I should also be taking methodrexate, planquienl, folic aicd, mutlivit. and I also suffer from depression. I take abilify for the depression sometimes. I am the only one in my family that has been dx with MCTD so I don’t know where I got it from. At first the drs thought that I was crazy saying that this hurts and that hurts, but finally my internal medicine (PCP) did some tests and said I think this is what you have. It was an eye opening for me. I had my third child and when I went to the rheu after she was born they told me that I should not have had her, because of my MCTD. Well my previous rhue did not tell me that! I was furious but glad to have her. I had a host of other medicial issues with the third child and it seemed to be never ending. But now I can say that I am much better. I do have to pace myself and make sure that I dont do to much and get plenty of sleep.
CindiBootheHancock	I have had M.S. for 34 yrs. My father, his first cousin, me, my daughter, my sister..we all have it. There may be more in my family I don’t know about. a) What autoimmune condition have you been diagnosed with? Multiple Sclerosis b) What were your original symptoms? The first symptom I remember was my hands not working to fasten my oldest daughter’s stroller strap. You remember, those that had the two circles? Was 34 yrs ago. Then when I was pregnant with my second child (born in 1981) my legs kept going paralyzed! Doctor kept saying it was because of the baby! But it continued after his birth. Then when he was 5 months old (late 1981) my feet were going numb but tingled up to the midcalf. Doctor finally said he wanted me to have tests for M.D. Yes, he knew MY father had M.S. but remember that back then it was NOT hereditary at all. And was considered terminal. I knew what was coming and said NO! So I did NOT get officially diagnosed till 1992 when I HAD to because I suddenly could not walk and one arm went dead. Yup was M.S. My eye doctor saw the symptoms in 1982. c) What treatments did you use? There were times I used Steroids for some symptoms. I tried Rebif. How effective were these treatments? Steroids, now I will not. They mess up my eyes. Rebif I had terrible injection site reactions, got depressed, had the flu, cold, bad fatigue. For 6 months. Then I said to heck with it and decided taking a med that I had to take meds for the symptoms….not cool. I quit. Now I take COQ10, B complex, ibuprophen, Vitamins E/D, iron, potassium, fish oil, and a multivitamin. As long as I take them regularly, get enough sleep, avoid stress when possible and don’t over due, no one can tell I have M.S. When I last saw my neuro he said “NO ACTIVITY” Don’t stop what ever I am doing! First time in 30 yrs I heard those words! I ALWAYS had active lesions! d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition? Get doctors you trust, do your own research. DON’T STRESS!! And take care of YOURSELF….no one else will do it for you! And if your support system won’t support you, GET ANOTHER ONE!
DaphneRoberts	greetings everyone. i have multiple sclerosis and have been dx since 2002. it happened shortly after i had my third son with a recurring blind spot in my right eye, but this time it did not leave. i had been trying to find out what was wrong with me since i was twelve. i had recurring blind spots, but because i was born with congenital cataracts, they mis-dx me with glaucoma for years. i would get terrible tingling and pain in my legs, extreme fatigue in the summer, numerous headaches and so on and so forth. they couldn’t find anything wrong so they said i was just a hypochondriac. it wasn’t until my son was born that the scars actually showed up. i take Copaxone, baclofin, and an anti-depressant for the attacks and pain. i was taking steroids, but all of a sudden my body has had a very bad reaction to them. if i could give any advice, it would to be your own advocate and be kind but be assertive. it is after all your body and no one knows it, even the drs, like you do. if no one listens or disregards you keep at it, keep reminding them, and keep telling them. be persistent while being kind. God bless you all daphne roberts
ibumpn2thngz	Do you suffer from an autoimmune condition? If so it would be great to hear your story! You might want to consider some of the following questions:- a) What autoimmune condition have you been diagnosed with? MS, February 14th 2000 b) What were your original symptoms?l had many migrane headaches as a teenager, but the only thing that made me go see a doctor was the day I awoke, deaf in my right ear, change in sence of taste/smell and numbness that progrssively caused my to become imparied in my right leg (my driving was not possible because I could not judge where my feet where in relation to my body..I had to look at them to make them work or go in certain directions (very upsetting) but moreso with the numness of my “lady parts” being 18 years old I knew it was a problem!! bY THE time it was suggestive of MS I had gone through several other diagnosises!! 1st was “too much ear wax” uh, nope I bought and used an earwax removal kit and not a thing came out-oops, then I paid to go see an ear nose and throat doctor due to my hearing loss and it was determined then that I had an Acuoustic Neuroma Brain tumor…Nope ultimately after MRI’s and an LP it was concluded definatively that it was MS…my life was over, well the hopeful part of being a successful woman, rather a single woman with 2 children she loves very much with no support rom thier father…shm… c) What treatments did you use? E.g. Steroids. How effective were these treatments? The one thing my PCP did, saved me and it saved me good!!!! by mouth steroids but in large doses..lt wasnt as quick as the solumedrol IV but pre-diagnosis and going through so much that wasn’t what it was, was really great!! However, though my hearing was a little bit improved and my arm and leg and foot were on there was for repair I didnt let it go becuase I had the 18 year old paranoid as crap thing…Though I HATE IT SO MUCH, I am glad I was able to be diagnosed within months versuses years!! d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition? The one thing I would have done differently would not be so paranoid of a flare-up, worst thing ever and l know how bad they are and can be lve went through so many that l know now my risk of permanant disability in those areas is immenant (if that’s how you spell that). Anyhow I wasted SO MANY OF My GOOD DAYS BECAUSE I WAS AFRAID OF THE BAD DAYS…. ADVISE IS TO LIVE!
rohrback2	In reply to Karen Brown.Karen Brown You are the first person that I have ever spoke to that has both Lupus and MS. I was told that I had Lupus at age 30. The MS came many years later at 50. I tried many of the Lupus and MS drugs, Never had much luck. Doctor placed me on Rutuxan and it worked for 6 years. Then I lost the drug because I was in a drug trial. Have been without it for a year. Increased optic neuritsis and MS and Lupus flares. Now looking at trying to get into s stem cell program at Hopkins… Good Luck with your battle Karen Brown
Northwood101	In reply to JulieHolland.Julie! I have hypoglycemia and was just diagnosed with MS in September.
Karen Brown	I have Systemic Lupus since age 19. Joint pain, pleurisy, pericarditis, pulmonary edema, mini-strokes, tremors, weakness. Naproxyn, Ibuprofen, steroids, aspirin therapy – many hospitalizations. Age 34 my legs went numb & I couldn’t walk. MRI didn’t show MS tho Dr suspected it. Recovered from that except some residual nerve damage infect. Was treated with steroids. Woke up one morning with numb right arm & lumbar puncture done. So in ’98 I was told I have MS. Steroids are typically the treatment for flares, whether Lupus or MS. I was on Copaxone 4 awhile. For years and years every new Dr I’d see, they questioned diagnosis. Yes u have it! No u don’t have it! One time I was put n hospital with apendicitis… Being prepared for surgery & then surgeon came n 2 room & said “It’s not apendicitis, it’s Lupus!” I know whether flare-ups are from MS or Lupus, treatment is generally the same… Steroids to clothe inflammation. I know stay out of the heat, rest more if I feel worse, try to avoid stress, & pace myself. I personally dislike meds due to side effects. Quit Copaxone & take Baclofen as needed, pain med as needed, & Adderol as needed. Taking Vita D3, B-12, folic acid, evening primrose oil. Fresh pineapple reduces inflammation. I have symptoms that now just are staying & slowly getting worse. Family members have auto-immune diseases…
ChipTori Munk	I have Hashimoto’s Thyroiditis which occurred after a head trauma in 1995. I had a goiter and had put on 30 lbs in less than a month. My TSH was only slightly elevated but my antibodies were off the charts. Then I was diagnosed with MS in 2012 after a neck injury. I was just diagnosed with Fibromyalgia and possible Raynaud’s. I was also told in 2010 that I have Hughes Syndrome (sticky blood syndrome). Thyroid issues run in my family, but none of the others. It’s been a few interesting years.
mandy1968	i had to have my thyroid removed because of hashimoto disease, i had a lump on my thyroid which tests indicated it was possibly cancerous, it was awful being told that and i just wanted it out of me, but after removal it was found to be hashimoto disease instead and i was told i would be more prone to other auto immune diseases, my husband also has progressive ms, i worry for my grown up children and my grandaughter incase autoimmune disease can be hereditory