Anyone out there who has multiple autoimmune conditions

[Hiibilly]

Hi I have just join and have been reading some of the posts and have found comfort already in nowing that I am not alone. I was diagnosed with PMR in February and having the initial uphoria and relief from taking prednisolone I have been seesawing back and forth with the dose struggling with pain and fatigue. I am managing on 10 mg just now but felt better on 12.5 going any lower results agonising pain. I was also curious to ask if others out there also have other conditions along side the PMR. I had ME in my late 20s and I have other autoimmune conditions affecting my skin as well as alopecia. Thank you so much for your open chat

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome.

Firstly if you are better at 12.5mg then go back there - and when you next try to reduce just do 1mg at a time - if you only have 2.5mg tablets then you can cut to get 1.5mg so long as they are white plain uncoated - or better still ask for 1mg tablets.

Secondly have a read of this - will give you advice on illness, pacing yourself, tapering etc - healthunlocked.com/pmrgcauk...

Thirdly, you will answers from others who have other conditions idc.

[Hiibilly in reply to DorsetLady]

Thank you for that I have already found a relief in finding out I am not alone

[PMRpro Ambassador in reply to Hiibilly]

Oh no, definitely NOT alone! One of the charities had a DVD about PMR and GCA and how it affected us - called "You are not alone"

[DorsetLady PMRGCAuk volunteer in reply to Hiibilly]

Never alone with a kitkat .,,or PMRGCA!😂

[PMRpro Ambassador]

In my late 20s I had something that would have ticked the boxes for ME had it not been called yuppy flu then! I recovered relatively quickly from the initial episode but the fatigue lasted about 4 years.

Once you have one a/i disorder you are considered to be at a higher risk of developing others. Personally I think that autoimmune disease is a broad and continuous spectrum and each of us develops their own personal a/i disorder although there is a predominance of some symptoms that can get you a label that fits with them. I think of it as a shop with loads of shelves behind a counter, full of various signs and symptoms. An assistant takes your delivery note and hands out an assortment of the signs and symptoms and send you on your way. They may chuck an afterthought at you as you get to the door, even come after you and call you back to get it.

Then comes the naming of names: you may get a diagnosis depending on which of your symptoms is most obvious. In the past they could only go by what they could see - all the tissue and blood evidence was invisible and some doctors realised that they had several patients who looked very similar. In those days you could achieve fame by writing about them - and giving it a name. As time has gone on science and technology has added to the knowledge and more a/i disorders have been described - like separating "dogs" by breed. Or combining breeds to get fancy new ones (that used to be called mongrels). All that means that each of us has our version of our a/i label - and doctors need to remember that!

Stop yo-yoing - that makes it even more difficult as time goes on. Get things under control at 12.5 and then taper much more slowly, 1mg at a time, maybe even just 0.5mg. And remember you must also do your bit, it isn't just a case of taking a pill and everything is back to normal. The pred just manages the inflammation and does nothing to the ongoing a/i disorder, it chugs along in the background, attacking the body tissues and making them intolerant of acute exercise. Do too much and PMR will kick back at you. making you hurt and feel as if you have flu, just plain unwell. It is a juggling act - but it is possible to live fairly well with PMR once you suss it out.

[Hiibilly in reply to PMRpro]

Thanks for that. Yes I remember it being called Yuppy flu I had a fit healthy young teacher who never went to the Dr's until then. And thank you stuck on your own it is some times hard not to push a little harder than you should. Having had ME you would think you would learn but it is a little like having life snatched away again and all you can do is watch from the side lines. I know that getting frustrated doesn't help and my family love me even if I only sit and read. Take pleasure in small mercies but it's really hard sometimes.

[powerwalk in reply to Hiibilly]

I still have ME an fibromyalgia. Was diagnose with ME about over 30 years ago. Not autoimmune I know. But I managed a life working etc. No-one in work knew about it. I hid it well!!!! But this PMR totally wrecked me. Between the pred and the condition I managed a bit over three years continuing to work. The fatigue was just unbearable. So as you see, you are certainly not alone!! Welcome for want of a better word.

[PMRpro Ambassador in reply to powerwalk]

sciencedirect.com/science/a...

There is increasing evidence that at least some cases of ME are autoimmune in origin!

[powerwalk in reply to PMRpro]

Oh really?? I will have a read. Tks.

[Hiibilly in reply to PMRpro]

Yes I had read that too. The common factor is that it is triggered by a virus and then your Tcells get over active and attack healthy tissue. I am hoping that the positive outcome of covid 19 will be a better understanding about why some people get long term symptoms after a virus. Keep my fingers crossed.

[Hiibilly]

So sorry to hear about that, it is exhausting going from one diagnosis to another, some you may have heard of but many you have not and all of them a frightening prospect to live with. I have alopecia totalise, nodular prurigo and spontaneous urticaria which means I ca get severe hives, the last time I had a reaction was when I had a steroid injections in my ankle which a bonie growth in it. I swelled from head to toe and although have concluded that it isn't anaphylaxis it was terrible and frightening enough to make me hyperventilate. You begin to feel a bit like a freak show, a helpful nurse said 'you can't have any more of those noe" as if I had done it on purpose. Anyway it's good to talk and glad that (not glad) but grateful to hear others stories.

[SheffieldJane]

I have Graves Disease ( since the 80’s) thyroid. I also have Psoriasis, confined to my feet. Pre-dates PMR.

[Hiibilly in reply to SheffieldJane]

It does make you wonder doesn'tit. I don't know much about Graves Disease but another autoimmune disease isn't it? Skin problems are awful to deal with.

[Lizzery in reply to SheffieldJane]

Hi, you mentioned having psoriasis on your feet, and I just wondered what form it takes. Is it flaky, or are there small yellow blisters too? I have PMR/Late onset RA, and hypothyroidism, and earlier in the year noticed a thickening of the skin on the outside of my foot, together with yellow blisters. As ever google was the place to go, as not a GP to be seen, and at first I thought it was athletes foot, and treated it as such. I’m now not so sure, but have been treating it with betnovate, after sending a photo to the Docs. Haven’t had a diagnosis, but just wondering whether it may be similar to your condition.Sorry about this long question.

Thanks.

Liz

[SheffieldJane in reply to Lizzery]

My feet are red and tend to burn in the night, they itch a bit too. The are extremely dry and sometimes there are raised red bumps. The skin gets really tight and then it breaks open in a full flare. I am mostly troubled when it is hot and sunny. They can swell and my toes appear like sausages. If I treat them twice a day with base cream and use 1% cortisone cream when it gets bad I can keep it under control. It has affected my toenails - I wasted a fortune on fungus creams. My Rheumatologist has wondered if Psoriatic Arthritis might be present. I have had it for years. I used to have it in my ears but Prednisalone got rid of it completely. It is flaky, I have never had yellow spots. I think it started off like Athletes foot. My feet don’t sweat or smell. This is not a good thing apparently.

[Lizzery in reply to SheffieldJane]

Thank you very much for your reply. It doesn’t sound like what I have, and so far the Docs haven’t said what they think it is, and just given me stronger steroid cream for a trial period. Time will tell. Thanks again.

[SheffieldJane in reply to Lizzery]

Always put the base cream on with the steroid cream, otherwise you get really dry skin.

[piglette]

I agree with the others if you were better at 12.5mg go back there you should never be worse off long term, you may possibly have a few niggles when you reduce for a while but not for long. NEVER try and reduce if you are already in pain. My rheumie tried to get me to do that.

[Hiibilly]

I am coming around to the realisation having had another awful day feeling I have no energy and dressing this morning left me feeling achy, I was better on 12.5m I could do things with out feeling I'd be better off in bed. With run up to Christmas I would rather be in a better space. Thank you it just helps to talk things through.

[Escarole]

Hi, I'd like to know how your reactive arthritis was diagnosed, because I:ve been told I could have that. Did you get a gammagraphy or specific blood tests? Mine started after a gastrointestinal virus, even though I was having a few pains and aches before. I've also had neuropathic pain (eléctrical currents on diferentes parts of the body), I wonder if it's the same as your peripheral neuralgia. Could you explain a little more about this? Was it treated in any way and are you better now? I hope so..Thanks

[Daffodilia]

I have PMR and under active thyroid

[whitefishbay]

Welcome. I have remnants of PMR and hypothyroidism. My advice is follow dead slow reduction of pred and keep moving. Best of luck.

[Hiibilly in reply to whitefishbay]

Thank you for that 😁 I will be talking to my doctor later. I was comparing my symptoms to the horrible pain I felt a few months again. It has been talking to the lovely people on here that the achy shoulders, hips and fatigue are the PMR and that I was doing much better on the higher dose. Neither the GP or the rheumatologist have discussed with me that it might take some juggling up and down with prednisone before I can start to taper it. Thank you so much

[Siral]

I have type1 diabetes (36years) and was diagnosed with PMR 3 months ago.

[nuigini]

Diagnosed with PMR 2014 and Celiac disease in 2018. I may have been experiencing the symptoms of celiac disease for several years prior to diagnosis.

[mtrafter]

I have had Primary Biliary Cholangitis for 13yrs and PMR for over 3 yrs.

[artfingers]

I also have Lichen Sclerosis (skin condition), also Hypothyroidism (Hashimotos), and had Psoriasis as a young child (no issues since then). Low Blood sugar but I don't think that is autoimmune. Good luck.

[Hiibilly in reply to artfingers]

Thank you to everyone who has replied to my question about other autoimmune conditions. There is some comfort in know you are not mad and others have had similar experiences although I wish that all of these conditions would get lost and leave everyone alone, they are not nice or funny. Looking through some of the past posts it seems this question has been asked before. I was brought up to struggle on regardless and that has cast me into the depths of depression at times, I am really struggling just now. Learning to accept that you have to pace yourself and look for the smallest victories is something I have found very hard. I haven't been able to walk my lovely dog since last Christmas going for a walk is something I am longing to do.I also wondered what pain relief others have been given. Since talking to my doctor I have gone back up 12.5mg of Penistone, I also take Amotriptaline currently 40m and I also take paracetamol and codeine but try to take no more than twice a day because of my skin condition which is irritated by pain meds. I can't take ibuprofen so I poss a problem for my doctor.

[SheffieldJane]

You should be on sufficient Pred to take gentle walks on the flat. It sounds more painful and disabling than it should. If your doctor is whizzing you down too fast, that will be why.

[Hiibilly in reply to SheffieldJane]

Thank you for that I am so glad I found this site

[Escarole]

Thank you for your long explanation, I don't think it's reactive arthritis then, because my pain is day and night, (not always the same) and I haven't had nausea or things like that.I thought there was a test for that.. I was also tested for the HLA- B27 but it was negative. It might be PMR then.. The currents are all over, legs, back.. and MRI showed something but not sure yet why.

I'm glad you are better now, thank you.