Another Autoimmune condition that I may have

Another Autoimmune condition that I may have

Dear All-I've got GCA-I saw a Dermatologist on Friday afternoon because of problems with my ankles skin following blistering on my left ankle. The blisters went away but not before they'd been seen by my GP. Now I just have open sores that weep a clear liquid and eventually crust and scab, and when the scabs go leaves a red area behind. It has been suggested that I may have Bullous Pemphigoid and I am to have a blood test to confirm. Does anyone have Bullous Pemphigoid and what was the blood test called to check it out. It is helpful that the treatment is steroids which I'm already taking for my GCA and I'm now on quite a low dose of 4.5mgs. As it takes 5-6 years for the BP to go away it is likely that my dose may be increased initially to get the BP under control, so I don't think that I will be getting down to "0" anytime soon as my Rheumatologist would like. He's done a fantastic job getting me down from 15mgs a day to 4.5mgs so I wait for the Tuesday CRP blood test with great interest. Last month it was 9. Sorry to go on and on but I'd never heard of BP just like I'd never heard of GCA and I've survived 3-years 5-months of that, so if anyone can help I would be very grateful.

Hope you are all keeping well. Oh you have probably guessed that's me picking blackberries in one of the forests of Suffolk, I think it's Chillesford taken by my darling wife Janet.

Colin

27 Replies

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  • I think there is someone on the lupus forum with BP.

    They will have checked the blood for pemphigoid antibodies. Did they also do a skin biopsy?

  • Hello, I'm sorry you've got this extra layer to deal with. I hope you are getting good advice from your Practice Nurses at your GP, on how to dress your blisters so that you don't get a secondary tissue infection. They can also give you dressings that are very absorbent too for when they leak that you can't buy. They can also give you skin barrier advice eg Cavilon cream or liquid applicators o protect your good skin if things get very damp.

    Out of interest, I don't know if you are on Omperazole for your stomach, but I've seen three cases over the years of confirmed (I don't know how) pemphigoid skin conditions caused by them. Might be worth checking.

    Good luck

  • Is that right? Must have a delve...

    There are drug-induced pemphigoids but PPIs don't seen to get a mention. Where it appears to be drug induced they assume it on the timing of a new drug and it erupting and several drugs have form: antibiotics and NSAIDs in particular.

  • I only heard of it because I was told by the patients whose legs I was having to dress that it had been proclaimed the cause. However, I don't know how they can prove it, especially with multiple meds being taken. I know my father in law's normally very mild eczema erupted into a weepy mess on his legs when he was given Omperazole for indigestion a few years ago on top of only inhalers. It wasn't a pemphigoid rash though.

  • Dear SnazzyD

    I've been taking 20mg Omeprazole since 2000 because my body makes too much stomach acid and the Omeprazole soothes the pain I was feeling. When I started on Prednisolone it was bumped up to 40mg per day because I was regurgitating much of my stomach contents. That only happens rarely these days so 40mgs was obviously very effective. This has been the first time I've lost so much skin and could see the flesh beneath. The blisters had to be seen to be believed, huge!

    I'll see what the surgery Nurse says on Tuesday when she does my CRP blood and Testosterone injection,

    Thank you very much for your help

    Best wishes

    Colin

  • Dear Colin,

    I hope you get to the bottom of it. It may well not be the Omperazole but it may need considering although I suspect it is quite rare. Proving the cause is tricky because there are so many.

    These rashes are very alarming to see, especially if they are on your legs!

  • Dear SnazzyD

    According to NHS choices the blisters can appear anywhere on the body usually on the upper arms and thighs sometimes spreading to body folds and tummy. In severe cases the blisters may cover most of the skin including the inside of the mouth. Luckily I'm only affected on the lower legs mid shin to top of ankle. I do hope I won't regret saying that. So, I must wait for the blood test on Tuesday to get it confirmed. The first blisters appeared in December 2016 and were seen by my GP on 15/12/16. The one on the front of my shin was lanced by a the Nurse Practitioner who then bound the leg from below the toes to just below the knee with a pressure bandage. I haven't mentioned the eleven drugs that I'm taking every day plus three supplements plus the annual zoledronic acid infusion so it's possible that a combination of them all or some is the trigger that started it off.

    Best wishes

    Colin

  • It may forever remain a mystery. Pressure bandaging is usually an effective way of stopping the leaking and I hope those blisters stay at one end!

  • Colin, I received a telephone call from a very long-standing friend a few days ago and, by coincidence, he mentioned that he was suffering from a very itchy skin condition. He was referred to a dermatologist who carried out a skin biopsy and subsequently diagnosed Bullous Pemphigoid. He has been prescribed topical corticosteroid treatment and said that, although it is early days into the treatment, he is finding some relief. It's good news to hear that you are doing well with your steroid reductions for GCA, and I do hope that you will do as well on the BP front. Enjoy those blackberries!

  • Dear Celtic

    I'm sure we did enjoy the blackberries the photo was taken in 2004. Chillesford is a lovely stretch of forest with a set of irrigation ponds in the valley bottom. Wildlife abounds rabbits, there's a pheasant rearing pen (very large) as well, fallow deer, adders one must tread carefully, as they invariably curl up to sleep on grass walkways. I just wish Janet was still here so we could share a walk like we used to.

    Thank you for replying. What a coincidence that your friend rang to tell you of his itchy skin. I've been climbing the walls trying to deal with my itchy skin if I say that I've wanted to tear the skin off it will give you an idea of how awful its been. Luckily I have an itch reliever call "Eurax cream" which works for 10 hours at a time which gave me some relief. I printed a couple of pages from NHS Choices for Bullous Pemphigoid and the picture exactly replicates the blister that formed on my left shin, and both ankles are a rich red colour. So, it does look as though I'm afflicted. At least I can stop blaming the Zoledronic Acid infusion. My Rheumatologist will be pleased he'd been blaming me for causing all the sores by scratching.

    Very best wishes and thank you once again

    Colin

  • Hello again Colin

    I really can empathise with your description of feeling the need to "tear the skin off" with the itch caused by your skin problem. Last autumn, I experienced a 24-hour itch like no other, covering the whole of my body from head to foot. It went on for a couple of months with night times especially being unbearable, making me feel completely on edge, and it became an almost daily ritual having to wash the bedlinen due to it being blood-stained from the overnight scratching. Initially, I was prescribed various lotions and potions and advised to take anti-histamine. I was advised not only to smother my body in Dermol 500 but also to use it in the shower and, although this did seem to help a little, unfortunately the effect soon wore off. When nothing worked, I was given prescription anti-histamine and offered referral to a dermatologist with the added comment that the referral would take at least 18 weeks! To save my sanity, I arranged a private appointment and a skin biopsy suggested the culprit to be one of my blood pressure medications. The skin problem abated within days of stopping one of those meds.

    It's interesting that SnazzyD has previously come across Omeprazole as the culprit, as the friend with BP to whom I referred in my previous reply, also mentioned that he has recently started taking Omeprazole! Although you say that you have been taking it since 2000, it might just be that a more recently added medication has triggered the reaction in the Omeprazole. That is thought to be what happened with my blood pressure meds. I had been on the first pill for 3+ years, and it wasn't until another medication was added that it triggered the reaction in the first. Food for thought there perhaps, Colin? Good luck with finding the culprit and, hopefully, getting some relief.

    Your description of Chillesford sounds idyllic, and although sadly Janet is no longer with you, I'm sure you have lots of wonderful memories to treasure, not least those made in delightful-sounding Chillesford.

  • Dear Celtic,

    I am on one long term blood pressure tablet (for at least 6-years) Propranolol Hydrochloride 80mg and Spironolactone a basic diuretic but when my weight rocketed in 2016 when Janet died I ate all the wrong things and went from 15st 03.00lbs to 18st 00.50lbs my GP added another blood pressure tablet, Amlodipine 10mg, so I've been taking two of them and still am. A second diuretic (Furosemide 40mg, this one is vicious I have to be very careful when I take it that I'm not going to be out in the two hours after injesting) was added as well.

    My memory remembers lots of walks in Chillesford Forest and I'd taken lots of photographs of the trees and surrounding countryside and of course of my darling Janet. It like many of the forests in Suffolk are wonderful places and so peaceful. If I can find it in my collection I'll send you a picture of a pheasant that Janet and I photographed on one walk. It was just as though he realised he was being photographed and kept turning around to show us his best side you'll see what I mean.

    Thank you for your interest in my problem, I'll let you know how I get on tomorrow at my blood test.

    Best wishes

    Colin

  • Gosh, that's a shed load of pills you must be on Colin what with four for the hypertension, plus the Omeprazole and the steroids of course. Whilst searching for the cause of your skin problem, it might be an idea to just check all the medications out with a good pharmacist for any possible interaction.

    I look forward to seeing your photo of the posing pheasant! It looks as though a private message has just come through for me so perhaps it's your photo.

  • What was the BP med Celtic? They put me on an ACE inhibitor first - the itch was horrendous! Started around my neck and then spread outwards and downwards. The ward staff just shrugged and gave me antihistamines that did nothing. As soon as I complained to one of the big bosses during ward round they moved though - and I have a large label on my notes: NO ACE inhibitors!!!!!!

  • Lucky you, PMRpro that you stuck to your guns and quickly got to the bottom of the cause of your itch. It can drive one insane! Allergic reactions, including rash/itching, is listed by the Stroke Association as a possible side effect of ACE inhibitors. The only ACE I have tried has been Ramipril....twice. On the first occasion, within a couple of weeks my blood pressure spiked even higher and I developed head pain and nausea. Ramipril was stopped in the belief that I was experiencing an allergic reaction, and I was prescribed anti-histamines and anti-sickness pills. A few weeks later along came the diagnosis of GCA/PMR! Fast forward several years and in remission from PMR/GCA, to appease my renal consultant, I agreed to give Ramipril another try. Again head/temple pain and nausea arrived on the scene, raising fear of waking up the GCA, so Ramipril was again consigned to the bin! Since then many other BP meds have gone the same way, with Losartan 50mg, taken for the last 3 years plus, appearing to be the only one without discernible side effects but not sufficient on its own to reduce my BP. The latest pill to be added, Doxazosin, was tolerable but only at the lowest dose, until 6+ months later the horrid itch arrived on the scene. At first, the dermatologist felt Losartan might be the culprit but because I had been on it quite happily for over 3 years, and after a skin biopsy it was decided that it was the Doxazosin that should be stopped initially, and the itch resolved. The thinking by both the dermatologist and the pharmacist was that Doxazosin had triggered the itching side effect in the Losartan. Now just cross fingers for me that Losartan isn't at the root of the UTI's etc - they're listed as a possible side effect!!!

    From memory, I think you might be on Losartan and Bisoprolol. If so, I do hope you are doing well on those.

    Sorry, PMRpro, that's rather a lengthy answer to your question!

  • Yup - perfectly correct. Two very low doses and works a dream.

    The final insult from the ward staff was the night I hadn't slept the entire night and they gave me a wet flannel! Not even an ice bag...

    Fingers crossed xxxxxx

  • Wow! "a wet flannel" - a lot of thought went into that!!

    Gave me a chuckle though.

  • I nearly threw it at her... And took GREAT pleasure in saying "I told you so" when the ACE inhibitor was stopped. I don't mind them struggling a bit with rare side effects - but I'd already pointed out the one that had caused the atrial fibrillation in the first place!

  • Infuriating - it shouldn't have to be you pointing out the obvious when you're supposed to be in the hands of the experts. At least, we're blessed to be compos mentis still and able to speak up for ourselves. Grrrr!

  • My favourable time of the year. September I thought? Love picking blackberries , love blackberry jam😀

  • Dear Elizcarroll

    My Mum used to make a blackberry and apple pudding. It came out of the steaming saucepan piping hot and the top layer of dough was cut open to reveal a glutinous mass inside the bowl (I do so wish I had the recipe) and ladled into our bowls was covered with custard and was a firm favourite for the three children and my parents. I am one of twins, my twin sister Elizabeth and my older brother Richard all loved Mum's puddings. There was a blackberry and apple pastry tart which could be eaten both hot and cold.

    Janet and I found a nice walk at Sudborne in Suffolk and the variety of blackberries was different to the ones we found in Tunstall & Rendlesham forests, in that they hung just like bunches of grapes in their 10's and 20's and they were so big.

    In my childhood we had a wired haired fox terrier named Sally who came with us on all our camping holidays and she helped whenever we were out picking blackberries, by picking them herself and getting the juice in her whiskers.

    Thank you for helping me pull that memory out of my head

    Best wishes

    Colin

  • The blackberry and apple steamed pud that we ate that that description fits perfectly was made with suet pastry. Never quite sure whether I like suet crust or hotwater crust (as in pork pies) better. All academic these days - if I wanted suet here I'd have to chat up the butcher and grate it myself...

  • I can almost taste that lovely blackberry and apple pudding 😀😀😀. I see your down to 4.5mg pred, like myself, good luck with BP, hope you get sorted and don't have to increase the pred by too much, take care

  • Hiya

    My father had bullous pemphigoid on top of other autoimmune conditions. I'm sorry to hear you have it too. Take very good care of your skin.

    Kate

  • Dear Kate

    I thought your photographs were superb, perhaps another one without the sunglasses could be provided if you are able. You really are a very beautiful lady.

    Thank you for the concerns about my skin.

    Best wishes

    Colin

  • I too have 2 other auto-immune conditions aside from the PMR. Mine are Hashimotos and Raynauds. I don't know where the run-away train stops. I will say stress may have something to do with it however. Trying to get in the mindset of meditation.

  • Dear nymima01,

    Stress indeed may be the cause, 2016 was the worst year of my life, losing Janet in April, then dealing with her estate until July, fighting with the Nationwide Building Society, the Post Office and Tesco Bank who are staffed by imbeciles who don't understand that widowers don't want to be reminded of their wives passing by post sent to their dead wives. I did manage to ring compensation out of all three so that was a little help. Then there was the fight with Bupa who decided that my GCA condition was chronic and they wouldn't pay for my Zoledronic infusion. I was paying £3,200.00 in 2016 for their contract so I cancelled it and am better off into the bargain.

    In 2017 along came Costochondritis (Rib Joint Pain) which needed investigation including a mammogram and a Breast Ultrasound. A mammogram is truly the worst experience known to man. My other condition is Klinefelters Syndrome and I have small breasts which hurt if I overdo the physical activities. I don't mean that but DIY and gardening because my rib cage is continually under tension because of my osteoporotic spine curve. And now some other rotter has decided that it'll come out to play. I'm sorry you probably didn't want to hear all my woes.

    But I agree with you that stress is a contender

    I do hope that the mediation helps.

    Regards

    Colin

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