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 |
| 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 |
| 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 |