I have psoriatic arthritis and sjogrens. I take methotrexate injections weekly and remicade infusions monthly. I still am having pain and swelling in between all of this. Does anyone else experience a lot of pain?
View 5 RepliesMy partner has been taking methotrexate for two years but due to the effect of it lowering his immune system he has suffered many infections and problems with wounds healing etc. As a result he has had to take various antibiotics, almost continually, for the past year. He has recently had a severe bout of mouth ulceration which, after research seems to have been caused by the excessive amounts of antibiotics creating a build up of the methotrexate. Does anyone out there know of an effective, natural alternative to methotrexate
View 1 RepliesI have had psoriatic arthritis since age 30 and I am now 67. I have the usual patches on the knees and last year in June I had my left knee replacement operation and they were able to do it without cutting through the psoriasis. I have now been on the operating list 8 times for my right knee replacement and it has had to be cancelled but nobody (Surgeon, Dermatology Dept) can clear my knee for me from the psoriasis. I am desparate for the replacement knee as from my knee my right leg goes out to the side about 12" and I am two inches smaller on the right side which aggrevates the arthritis in my spine and gives me terrible pain. I cannot sit most of the time and have to lay on my side. Can anyone help. I am using Dermovate Ointment 0.5 mg clobetasol and going on a sun bed.
View 1 Repliesi was diagnosed 2 years ago and since then i have been on methotrexate but since that hasn't worked i have recently been put on sulfasalazine which i take four a day and am still on 6 methotrexate a week. i am hoping this is going to work but since i have been on this i have been having bad side effects such as really bad head aches, dizziness and feeling sick all the time and lack of appetite so hopefully that will die down over the next few months. the only thing that i have found when feeling sick is by having zantac as it helps settle the stomach.
View 1 RepliesHas anybody had the associated anterior uveitis associated with psoriasis and has anybody's psoriasis been made worse with the menopause !
View 1 RepliesI had Guttate Psoriasis thirteen years ago (just the one time, it went away not to return). Fast forward to two years ago I started getting bad pains in various joints, was told I had Burst is, then an impinged nerve and then gout and so on. At the end of January I woke with a severely swollen painful wrist. A visit to our new gp resulted in referral to the hospital and at last a diagnosis. What I want to know is, is it normal for my skin to be itchy all the time ? I don't have Skin Psoriasis. I'm not sleeping well and it's driving me mad, just bought some E45 itch relief cream which I'll put on before bed.
View 1 RepliesI'm 40 years old, mum to 2 girls 16 & 11. I just been diagnosed with psoriatic arthritis and I'm so scared and confused, I'm looking for people in the same boat to help me understand what I'm going through. I have suffered with scalp psoriasis for about 10 years. For about a year I had the odd pain here and there, but nothing I thought was worth going to the doctors about, but 6 months ago my knee started to hurt more regularly but I still put it down to getting old. One night I woke up in excruciating pain on my knee, could not move it at all, took a couple of hours with a bag of frozen peas to ease the pain and after taking painkillers the pain went and I carried on with my life. Just under 2 months ago that same pain came back but not just my knee, my shoulder, my elbow and my neck were affected too. I felt like I was paralysed by pain and had to be practically carried to the GP. That was the first time I ever heard of PA...I didn't even know it existed. My GP suspected it and sent me to loads of blood tests, and prescribed a load of tablets. A week later the pain was not easing so back to the GP and this time he gave me stronger co codamol and the pain started to get better. Another week and the blood tests results came back and showed inflammation, very low vit D and folic acid, so GP gave me supplements and decided to give me a 3 vial steroid injection, which he was hopeful could relieve me of pain for a month, while I was being referred to the rheumatologist. I was pain free for 3 days and then it came back with a vengeance. Back on the co codamol and naproxen but the pain was easing just a bit, I couldn't sleep as I any position made something hurt. GP asked for an urgent referral, but that got lost and despite me trying to get things moving, nothing was happening fast enough so I went private, got an appointment within 2 days and a diagnosis. I started methotrexate 2 weeks ago, which makes me very sick and diarrhoea for 3 days, then it settles. Still on co codamol for pain as I refused the steroids the rheumy wanted to prescribe. My life has been turned upside down, almost every day I wake up with different joints hurting. I feel like the pain is eating me away, it's so disheartening when I can't even prepare my child's lunch box because my hands won't allow it. I work through an agency and they are on the verge of getting rid of me because I have taken the odd day off when the pain is just too much. I have been on anti depressants for years and I feel my depression getting worse, I don't want to leave the house or see anyone because I feel so so low. Will it ever get better?
View 32 RepliesI'm 25 and over the past 6 years I've been diagnosed with 4 pretty serious autoimmune conditions. When I was 19, I was diagnosed with Rheumatoid Arthritis which is often crippling, even now. I was told this was an autoimmune condition. Shortly after, I was diagnosed with Coeliac Disease, another autoimmune condition. The Arthritis and symptoms of the coeliac disease when I hadn't controlled it obviously made me feel unwell and I often felt lethargic and unhopeful due to a lot of pain and stuff going on in my body.
I managed to go on a clinical trial which allowed me to have a new and powerful arthritis drug which dramatically improved the condition and I managed to cut gluten out of my diet. I also lost a bit of weight - this helped.
However, after the trial, my symptoms of arthritis gradually came back but was usually kept under control with the exception of a few flare ups.
When I was 23, I was diagnosed with Type 1 diabetes after getting a very quick onset flurry of symptoms (another autoimmune condition) - I find this very difficult to manage.
I've recently moved cities and transferring all of my specialists and treatments left me with no arthritis medication, and a long wait until I see a diabetes specialist to adjust insulin levels. As you can probably imagine, I've been in an awful lot of pain and been feeling very down, tired and lethargic. I'm very upbeat although having so many conditions and I don't let it bring me down, even though I work a full-time job 8 til 5 everyday. I've been having problems with blood tests, platelet counts, that kind of thing.
I was aware that I had the antibodies for Hypothyroidism as I had the test for that about a year ago and I knew it was just a matter of time before I developed it. Upon my most recent blood tests, my TSH level was 47.7 - ten times the top end of the normal limit. I've literally just started levothyroxine but, as you can imagine, I feel completely overloaded with health issues and like my head is going to explode and quite down about it all.
I'm sorry to give you my life story but I was just wondering if any one else has any of the other conditions I have and how they manage with all of them?
Also - how should I have been feeling with a TSH of 47.7? Should I have been feeling VERY different because, like I said, I always feel fairly tired and down due to the combination of illnesses. Any advice at all would be appreciated - I feel massively alone with this.
I was diagnosed with RA 5 years ago and have tried many of the drug therapies out there, Methotrexate; Leflunomide, Cimzia, Tocilizumab; Rituximab etc. I have recently been diagnosed by my GP with Fibromyalgia which is excruciatingly painful. Is there anyone out there who has similar conditions to me who could tell me if anything has worked for them. I have been put on Fluoxetine, Tramadol and Pregabalin to try and help with the pain. Any suggestions?
View 12 Replies I am male and so likely have had less severe autoimmune manifestations than females since they seem to have stronger immune responses. However, I have had some difficult times with autoimmunity. It started in 1972 with antiphospholipid antibody syndrome which caused deep vein thromboses in both legs. I started taking coumadin at this time but the dosage was not high enough to prevent some further clotting and a number of the clots travelled to my lungs causing pulmonary hypertension. Eventually, in 1994, this became severe enough to cause heart failure and the clots were removed via a pulmonary thrombo-endarterectomy. Subsequent to this, I developed lupus symptoms and lost both my adrenals and thyroid to it. The other lupus manifestation was regular pleurisy attacks. Also by this time, despite the coumadin, I was getting regular small blood clots on the skin on my feet and ankles, many of which subsequently turned into painful ulcers. In 2006, after reading an article on the internet by a doctor in charge of a hospital ward who was giving his patients 5000 units of vitamin D3 to prevent them getting sick, my wife and I started taking 5000 units of D3 ourselves hoping to avoid colds and flus. The vitamin D3 worked in stopping the colds but, in my case, it had another even better effect. The blood clots on my feet stopped and I have had none since.
In addition the pleurisy attacks almost ceased. With some additional experimentation, I found 10000 units of vitamin D daily (in split doses morning and evening, stopped the pleurisy attacks altogether. I remain free of the autoimmune effects since I started on the higher D3 dosage. I discussed the dosage with my hematologist and he felt up to 15000 units a day should present no problems in causing calcium over-retention (stones). I would recommend to anyone with auto-immune problems to try at least 5000 units a day of vitamin D3 to see if it reduces autoimmune problems. If you are concerned, you can discuss it with a doctor first but I have been taking 10000 units a day for several years now with no ill effects.
I am a 29 year old female and I was diagnosed with Hashimoto's Thyroiditis at the start of the year. I have been having problems with my right eyelid in that over the course of the day it progressively becomes droopy and the only thing that relieves it is when I close it. When it becomes droopy it makes my eye feel like there's something in it and I end up rubbing it. It's only when I look in the mirror that it's droopy.
In January my endocrinologist ran an autoimmune profile (but not for every single antibody) and rheumatoid factor and these are the results of it:
Rheumatoid Factor - 9IU/mL (<20 negative)
HEP2 - Positive
Type - Speckled
Anti-DSDNA - 7IU/mL (<30 negative)
(Positive antinuclear antibodies but no significant disease association found)
ENA screen - Negative
Autoimmune profile
Antinuclear Abs - Positive
Anti-Smooth muscle Abs - Negative
Anti-Parietal Abs - Negative
Anti-Mitochondrial Abs - Negative
Anti-LKM Abs - Negative
Anti-Thyroid Peroxidase Abs (Anti-TPO) - 141 kIU/L (<34 negative)
I am posting here because I have a suspicion that I have Myasthenia Gravis. Not only have I got the problem with my eyelid but I tried to follow some physical tests for muscle weakness such as holding my arms out straight in front of me and deep knee bends.The results of these home tests I did:
Holding out arms stretched in front for 60 seconds - pain in both arms when it came up to the 60 seconds and left arm dropped slightly
10 deep knee bends - did all 10 knee bends but the last 3 made my legs feel weak and shaky
5 sit-ups (sitting from lying down) - could only manage 4 sit-ups
I have an appointment with my GP on Friday and since this has now appeared I'd like to mention my concerns to them.
My main concerns are :
Wouldn't my endocrinologist have tested me for Myasthenia Gravis if it's an autoimmune condition? If so what antibodies would she have tested and would any of the ones I had tested have shown I have Myasthenia Gravis?
Who do I need to request to see to get a confirmed diagnosis?
If it is indeed Myasthenia Gravis would it be because my current autoimmune condition made it worse? I have read that this is possible and I became very hypothyroid yesterday as I had very bad Reynaud's flares when out and about.
So now I feel like a complete hypochondriac. Ladybud (who is fabulous, btw) has helped me tremendously. I am wondering if any of you have had your ANA patterns change. I am having muscle aches, dx with small fiber neuropathy and Raynaud’s, my RBCs and C-reactive protein have been low throughout the last 3 years. I now have been dx with a reactivation of the Epstein Barr virus and alopecia due to “granulomatous Dermatitis” (getting 2nd opinion later this month).
These are my titers and patterns over the years:
10/2011 ANA Titer: 1:320 Pattern: Homogeneous
11/2011 ANA Titer: 1:320 Pattern: Homogeneous
10/2013 ANA Titer: 1:320 Pattern: Homogeneous
5/2014 ANA Titer: 1:160 Pattern: Homogeneous
AND NOW:
6/2014 (AVISE SLE 2.0 TESTING (1st time with this test) ANA Titer: 1:80 Pattern: Diffuse fine speckled
Negative on all markers. I am HLA-B27 Positive, but negative for ankylosing spondylitis (AS).
Now my rheumatologist stated all my blood work appears to be normal and I have ZERO autoimmune positivity.
Huh? I feel like such a hypochondriac.
I've just heard from my GPS surgery that my most recent blood test shows I have virtually no iron! As I have several autoimmune diseases including autoimmune hepatitis, rheumatoid arthritis, SLE (lupus), Raynauds, Sjogrens, acquired autoimmune hypothyroidism) , I'm rather afraid that this could be pernicious anaemia or hemolytic anaemia, as I've never had a low iron level until now. I was taken off methotrexate due to respiratory problems (side effect) and am on prednisone 25mg/day. Does anyone have any experience of sudden iron deficiency please?
View 4 RepliesI was diagnosed with fibromyalgia years ago due to constant and sometimes debilitating muscle and joint pain. I am seeing a new PCP and she ordered some blood tests. The first was just a general screening but my c-reactive protein came back as elevated (also my platelets) so the doc ordered an ANA with reflex if positive. ANA came back positive (no titer information - it was just a positive/negative test I guess) and anti-SSA came back at 8.0 (negative range is 0.0 to 0.9). But RA factor, anti-centromere B antibodies, anti-dna (ds) qn, anti-jo-1, anti chromatin, anti scleroderma-70, rnp, anti-SSB, and smith antibodies are all normal.
Besides my muscle and joint pain I have had periods of alopecia (losing quarter to half-dollar sized patches of hair on my head), full-body rashes during especially hot times, asthma, and suspected endometriosis (currently controlled by depo-provera). I also used to never get sunburnt but my face especially gets really red now if I am in the sun for more than a little while. I have darker skin so its sometimes hard to see but lately my cheeks and nose seem constantly flushed.
All of these symptoms have been spaced out and gradual so I never thought anything of each individual symptom. The alcopecia was blamed on "stress" when I went to the doctor for it. The rashes I blamed on a simple "heat rash". My pain was diagnosed at first as carpal tunnel and then as fibromyalgia. But now with the ANA and anti-SSA tests I am thinking it all may be related. But I don't know and my doctor is out of town, and although I know she will refer me to a rheumatologist now as we have talked about that, who knows when I will actually be able to see the rheumatologist. So any thoughts would be greatly appreciated. I am thinking maybe SLE (lupus) but with only that one anti-SSA and none of the others I don't know. Also I do have flares 2-3 times a month where my pain gets much worse but it constantly hurts and aches the rest of the time regardless, which doesn't seem like typical lupus. Oh and I also had severe fatigue until my doc put me on Savella which helped with the fatigue but not the pain. So now I am on gabapentin also but it doesn't seem to help too much either.
I would do almost anything just to be pain-free for even just a day. I am hoping with the ANA results now the doctors will not only maybe be better able to treat me but also will take my pain seriously.
I was just told by an opthamologist I saw ystrdy for a new patient visit, that my blood work that's been coming up positive for ANA since 2012 just means there's inflammation in my body. Not an autoimmune disorder.
last week a vessel broke in my right eye and it felt weird under the lid. It disappeared the next morning. Then I noticed one a few days later in opposite eye in the morning putting on my mascara, So my husband told me I MUST see an eye dr.
I brought copies of my labs and said that I'm referred to see a rheumy dr.because of positive ANA's.
I had to write down my whole history upon a first patient visit so he knows I have osteoarthritis throughout my body in different parts.
BUT, I didn't mention the strange rashes and how I just out of the blue mopping a floor tore and blew out 60% of my knee meniscus and needed surgery. The right knee feels like something is growing in it. and it clicks when I go down the stairs as if it's catching on something. so when I saw my family dr. for my knees, he only ck'd out the injured one and said he doesn't think it's rheumatoid arthritis but thinks it may be lupus, and referred me to see a rheumy dr. but I can't get in right away. I had to wait 3 months, but the day I went my car didn't start which wound up being a dead battery. I called the office and told them what happened and they couldn't put me in for ANOTHER 3 months. so I'm now waiting almost 6 months to see this so called excellent dr.
I get strange pulls and inflammation in muscles or tissues, like out of the clear blue sky I had pain that radiated down the right side of my buttock and it got to the point where it ached all the time. My rheumy dr. who no longer is in practice, sent me for MRI and it wound up being the psoas muscle. I had to see a radiologist in my local hospt. to get a special injection put thru the hip to get to the psoas. IT HURT LIKE you know what!!!! next day too.
never had it come back. How on earth did I pull my psoas?? the largest muscle in the body. it keeps you from falling off your chair.
My left hip hurts so bad at night that it wakes me up and an old mri says there's a sprain in it??? plus arthritis.
I also have had raynauds syndrome which started during my divorce in 1998. plus numbness in hands, arms, fingers at night and even the scalp.
keep losing hair and breaking off at the edge of my scalp and going bald on sides of head. I have osteoporosis diagnosed many years ago which I refuse to take medication for cause of side effects. I just take calcium.
the list goes on. I used to have a lot of pain everywhere and was diagnosed with fibromyalgia back in 2004. but I don't get those symptoms any more like I used to. so did I actually have it or not? wouldn't I still have the symptoms?
My c-reactive protein level was positive one time only. but the ANA started in 2012 till now. I get blood work done each year.
So Is it just inflammation because of my osteoarthritis? do all people with osteoarthritis have positive ANA tests?
The opthamologist made me feel like I shouldn't even bother going to the rheumy dr.
am I just making a big deal out of nothing?
I was diagnosed Hashimotos this year.
Here are my adrenal stress test results:
Sample 1 - 3.4 (12-22)
Sample 2 - 6.1 (5.0-9.0)
Sample 3 - 4.8 (3.0-7.0)
Sample 4 - 3.2 (1.0-3.0)
DHEA:Cortisol Ratio - 2.62 (within range)
Latest thyroid function test results:
TSH - 2.50 (0.2-4.2)
Free T3 - 4.6 (3.9-6.7)
Free T4 - 15.7 (12-22)
Apparently my doctor says these are normal, yet when I am taking the Levothyroxine my Free T3 drops and my hypothyroid symptoms return. Am I missing something or am I the only one in the world with this problem? I presume the latter.
I am currently dairy and gluten free and my fatigue and constipation have cleared up since on the diet, however I retook my Levothyroxine and within 2 hours I was constipated. The only change I had made was retaking the Levothyroxine but I did increase my fluid intake, too. The reaction I had from the medication is making me doubt the benefits of it. Or could I be undermedicated at 125mcg? The nurse taking my blood last time said 125mcg is a lot for a little person like me to be taking!
So, in order to wipe the slate clean and start afresh with my care, I have since changed doctors and will be asking for the following at my first appointment:
Sex hormone profile - not just the testosterone, FSH, LH and prolactin my endocrinologist carried out but I would like to include the ones she has *missed* - the oestrogen, estradiol and progesterone. I am sure there are others in there...
Full mineral/vitamin profile - but excluding the folate, Vitamin D and Vitamin B12 which were done recently and including a full iron panel.
Repeat thyroid test - why oh why am I experiencing hypothyroid symptoms AFTER I take the Levothyroxine? When I reported this to my previous doctor they have told me they will end my script for Levothyroxine since they are under the impression I get no ill effects without the medication! Are they right?
Wonder if anyone has been diagnosed with AIHL and finding treatment unsuccessful? I'm on immunosuppressants but now steroids because of extreme flare up and hearing rapidly declining, steroids now too.
View 2 RepliesHow did you discover that you had a autoimmune disease? What were your symptoms prior?
View 8 RepliesI was diagnosed with MTCD 2 years ago. My case is lupus and they don't know what else. My case is mild. I really don't have much pain but I can feel something is there. Over this past year, 2013, I noticed my hairline is receding and now the whole top of my head is thinning. I always had a really beautiful thick head of hair and took great care of it. I keep it short but kind of spiky. Always looked good. But now as I stated my hair is thinning so much you can see my scalp. Just wanted to know if this is happening to anyone else. I am currently taking plaquenil, prednisone, cymbalta and imuran. Very low does. My doctor told me to cut down on the prednisone but after 4 days without it, I felt bad. I visited my dermatologist last year for a scalp biopsy but he said I didn't need it and I agreed. No thyroid problem yet but my numbers keep getting high. I'm thinking it's all of the above but don't know what to do about it. Any suggestions besides a wig?
View 1 RepliesI have been having joint pain, general body pain, fatigue, depression and anxiety for years. I was dx with fibro about 3 years ago. It was first suspected almost 20 years ago. My mouth and eyes are painfully dry. My lips constantly crack. I recently had a PAP done and the GYN remarked how dry my vagina was (I'm not sexually active so I never noticed).
I recently saw a rheumatologist here in the State (I had previously seen one in Korea). She did a bunch of blood work. My Vit D was 28 (reference range was 30-70). RF, ANA were negative. CRP not done, but has been elevated in the past (multiple draws over a two year period, but none in the last year). ESR was 58 and has been elevated for 20 years (I went through a lot of blood work in high school and nothing was ever found, but it was with ID, not Rheum).
Rheum was next to useless. She said the sed rate wasn't relevant and that there was no need to worry about the Vit D (which was lower in the past) even though I was taking 2000 IU a day.
After talking to my GP, he had me increase the D supplement to 4000 IU/day. He also wrote me a new referral to a different rheum. This one specializes in seronegative arthritis.
I try to be an informed consumer. Current rheum just wants to throw more pills at the issue without getting to the root of it. It seems like if I go in with a fibro dx, everything must be fibro. How do I approach this new appointment (in September!!) to finally figure things out? This new doctor will be in the UH system as are all my other docs. I think she'll have access to previous lab results, if not I can pull them up in my EMR.
I could use words of wisdom, advice, a kick in the butt (if necessary), etc.
After MRI my diagnosis was "Lots of mileage left, another 10 years, at least!" (I am 75)! Good to hear but still have to be careful going DOWN stairs! Not too bad going up! Some pain now and again. BUT I sometimes get a strange feeling on upper left thigh, (the worst knee), as if it is wet but when I touch the skin it is totally dry! Happens after I have been standing for a couple of hours.Also, sometimes the skin feels sore, but there is no evidence to show. Has anyone had similar feelings?.
View 1 Replies