I am between a rock and a hard place at the moment and wondered if anyone out there was horribly sensitive to prednisalone .
I am sero negative with suspected Sjogrens but also with a host of other medical problems seemingly all related. I am also extremely drug sensitive making controling symptoms very difficult. So far only regular steroids have kept the worst of my symptoms at bearable level but now even they have become problems themselves.
Fot almost four years I have been on Depot Medrol Injections 80 mg every twelve weeks, plus 2.5 Pred dailly, plus hydrocortisone usually 15 mg as I need ,as I also have Addisons which thankfully is still mild. That mix has been what is keeping me ticking over albeit not wonderfully at all!
I have now developed a horrid sensitivity to the Depot Medrol injection with soaking sweating , no sleeping and blurred vision for three weeks every time I get it. After three weeks symptoms subside a little. When I say sweating, I am having to change all under clothes three times a day and the bed is soaked every night.
I do have chronic autoimmune pancreattis and biliary disease and kidney problems so maybe my sytem just cant cope with the injection. The Prednisalone oral is not great either. I have to take the enteric coated 2.5mg as the ordianary ones give me gastritis.
Once I live through the weeks of side effects after the Depot injection I reach a plateau where I reach the anti inflammatory benefits which gives me just a few weeks of life being more bearable, then it is time for another injection and the drenching sweating again. Worryingly I also have glaucoma and I do notice the injections are giving me blurred vision in my worse eye,
I am due a visit to my GP next week and want to talk it over with her but wondered if any of you out there have tried different steroids other than prednisalone with less side effects. I hoped a wee tweak with the steroids might bring some relief.
Many thanks.
I
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cuttysark
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I hope others comment where I can't Cutty - but just to say it sounds awful and cyber hugs wending their way down from my northerly home - the present high 💨 should carry them fast (()) x
Thanks so much Twitchy , I caught the hugs on the North wind!!! They were fluffy white and most comforting!!
I honestly don't know whether anyone can help as I am just not sure if there are many alternative steroids out there.
Weird thing is the steroids really help the autoimmune pancreatitis , without them I can hardly eat. But on the flip side they don't help the bile duct problem much, in fact I think they irritate it and worsen all the sweating.
I had a colonoscopy last week to rule out Ulcerative Colitis as my Dad had that. Bowel looked fine and they also took routine biopsies, but don't expect a problem with the bowel.
All the loo problems they think are basically from malabsorption caused by the pancreatic disease. Although I take Creon pancreatitc enzymes and ursofalk bile acid ,my food rushes though undigested as the pancreas is hardly functioning now. The steroid though make a massive difference to being able to eat so without them I would fade away!!!
My old Prof is away fishing lobsters now, and as you know he had me sorted out pretty well. So I am a bit at a loss without him.
Now I am back to NHS locally and they have been good so far . My new GP is wonderful but has been ill for two weeks with Noro virus but I see her on Monday.
At least the new hospital consultant acknowledges I do have autoimmune pancreatitis despite normal bloods and that it is all complex and difficult to treat. At the moment seems to be Sjogrens they think, but say my treatment is the same whatever the label. Will be interesting what they do next by way of treatment as old Prof Mills wanted me on the myco.
Keep cosy up there , has to be chillier by the weekend!
Oh glad my hugs are fluffy white clouds - my favourite!
Having lots of much less severe GI/IBS-c problems now and suffered from Aza induced pancreatitis last year I can relate. I was hoping perhaps that rheumy registrar would phone me and let me know decision of clinical meeting yesterday re Myco or Rituximab so I know what to ask my old GP tomorrow morning rather than wait for weeks for a letter. Maybe I should phone the hospital and see if the secretary can ask? Ohh I'm a bit of a wimp about this stuff but going to do it right now as I'm finding the suspense hard to bear! Cortisone is different to Pred is it? This is what someone I know takes for a pituitary tumour so I just wondered re your dilemma? X
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Ps Phoned and letter was sent out today authorising me to start Myco as long as I can get the weekly monitoring. X
Ha ha you remember my nickname for him then?! I'm not so sure he'll comply - he's hard as nails - but I've got a prescription for the first week already and a blank one for week two. Then it will be over to him because I'm not able to get back down until mid January. I did extract a backdated sick note for contributory ESA from him by brute force last year and that was pretty unpleasant - so if necessary I'll dig deep into my old arsenal!
I think it's time we both kicked some doctor bottoms don't you?! X
Yes, I also couldn't bear the waiting to find out what they have decided!!!!
You could get the Nobel Prize for waiting with all you've gone through , so give the hosp secretary a phone and hopefully your GP up home can begin the treatment for you. X
Thanks Cutty. I did it! I phoned the rheum secretary and she read the letter and I'm to go ahead and start Myco. I also spoke earlier to the BSSA helpline person who talked me through my options and made me realise that carrying on being untreated and listening to the advice of my neuro is simply allowing the inflammatory process to get more and more of a hold. The tendonitis is bilateral and is certainly what is causing the weakness and fatigue in all of my limbs and the tinnitus is unreal now - a constant scream!
I'm really hoping my old GP shows willing tomorrow but he will have to prescribe as well as monitor me and he won't like prescribing Myco because it's dear and he's tight as anything.
However he also owes me I feel, having failed to identify pancreatitis last year and then having failed to look under my cholecystectomy dressing to find a post op wound infection that rapidly led to full scale blood poisoning. He did apologise so I do hope I'm not forced to remind him of this!! I'm fond of him but have had run ins with him before and he's not great at being crossed.
Still I'm lucky compared to you I know and this is partly what decided me to get on and try further immunesuppression again before I do sustain organ damage. I already have subcliniccal atherosclerosis and lousy genes! X
I'll start by explaining the different sorts of steroid:
Prednisolone is the version mostly used in the UK, it is the active form and is ready to be used by the body as soon as it is absorbed. It is given as tablets, plain and enteric coated.
Prednisone is the version used mostly in the USA and it has to be processed by the liver to turn it into prednisolone before the body can use it. It is also given as tablets, there is no enteric coated version but there is a delayed release version called Lodotra.
Methyl prednisolone or Medrol is a slightly different version of prednisolone - it has an extra bit to its structure (the methyl group) which is felt to make it more effective as an antiinflammatory but it also makes it more likely to cause side effects. It is the version used for infusions and injections.
I was fine on prednisolone (plain and enteric coated) with just minor side effects (no real weight gain but the weight I had gained before diagnosis redistributed itself to the usual places). Medrol as tablets was hell on earth - it didn't work at all for me and I had massive weight gain, my hair and skin went mad and I developed a fine black beard! I was then switched to Lodotra as that is the only form of steroid other than Medrol that is available where I live. I really like it - but it is expensive so in the UK it is rarely approved.
All these 3 steroids are what is called "intermediate acting" corticosteroids - their antiinflammatory effect lasts about 24 hours so you only take them once a day. The DepotMedrol injections are slow release and as you know last for a few weeks. My granddaughter was put on them for her asthma because the consultant thought (wrongly) she wasn't taking the tablets and that was why her asthma wasn't controlled (she wasn't on a high enough dose of the other meds!). With the Depotmedrol she was almost manic, violently tempered and gained shed-loads of weight amongst other things including sweats, though not as bad as yours. They start by releasing a relatively high dose and then it falls off over the three weeks to quite a low level - that may be why you are so bad the first week and oral pred might let you manage with a steady same every day dose instead of this high to low being repeated.
What is the problem for you with the enteric coated version? You can get prednisolone as a liquid formulation as well. Might that help the stomach problems? Is that why you were put on the injections rather than oral?
Hydrocortisone is a short-acting corticosteroid - which means it stays in the body for less time and that means taking doses more than once a day.
There are other corticosteroids whose action lasts much longer, they include dexamethasone which stays in the body for about 2 days.
I don't know enough about these two to say how they are used (other than HC in Addisons which you also know about) - but they all potentially have the same side effects. However, different people respond differently to different ones so you could discuss it with your doctor.
This is so helpful PMRpro . Thanks for taking the time to explain it all. Now a lot of things make more sense for me.
I did have a long acting Dexamethasone depot shot after a spinal neck operation a few years ago which was miraculous, got me running about again like a spring chick and eating like a normal person.
It lasted three months gradually wearing off and appart from being initially a bit hyper ,had no side effects. This was before I was put on the other steroids. I realise now from what you have said it is very strong so they were not keen to use it again. At that time they didn't know my other problems were autoimmune.
I then deveoped Adrenal Insufficiency so was put on hydrocortisone . As it became more obvious that the other problems I had were also autoimmune they changed to prednisalone but I could tolerate no more than 2.5 mg without side effects such as profuse sweating so that was why I also remained on hydrocortisone instead of increasing the Pred.
My Rheumy thought I had seronegative Sjogrens along with autoimmune pancreattis but they also suspected Biliary Cirrhosis too ,so he suggested we try the Depot injections, this was about three years ago.
This all went reasonably well till about seven months ago when I began having three weeks of very miserable side effects after the injection. Now I understand why, as you explained about it releasing more quickly initially.
The very strange thing with the Pred uncoated tablets were that it seemed to aggravate the biliary pain although it helped the pancreas massively. Even the coated ones I take upset the biliary problem if taken in larger doses.
Hydroxichloroquine did the same thing and had to be abandoned, due to biliary type pain. The doctors all assumed it was gastritis from my stomach. I have been on Esomeprasole for ten years as I did have severe gastritis for decades before that.
I honestly am not sure what they will do. I changed GP practice a few months ago and the new one is excellent, so I know they will listen and try to help me.
From what you have explained I now feel I do understand about the different types of steroids. It may be I am unable to tolerate any of them ,apart from the hydrocortisone.
I had a previous gastro who was very very experienced who has sadly retired and thought I had a type of IGg4 disease and wanted me on Myco. He discounted the fact my bloods have always been frustratingly normal.
The Rheumy is now unsure what to do and on the point of retiring himself. Nevertheless he does understand I will be in a bit of a state without the steroids re the pancreatitis.
I am now at a new consultant locally but he wanted to get the colonoscopy out of the way before he sorts out the rest.
At least I now have a wonderfully supportive GP.
Sorry for the lengthy explanation!!!!
And thanks again for all your help. Makes such a difference to have it explained!!
Cutty X
Cutty I know your rheum bloods are always normal but surely this is partly because of the steroids? So I think if it were me I'd discuss being referred back into NHS Rheumatology to the rheumy team recommended by the BSSA as special interest in Sjogrens? It's time they acknowledged your Sjogrens formally and treated it as such. I feel strongly you should be allowed plenty of room for seronegativity bearing in mind the other acknowledged autoimmunity and necessity for steroids.
So many of your problems could be helped by a proper antirheumatic drug I feel and I have been told that your part of Scotland is the only place with some level of expertise in our disease. Time to ask your great new GP for a referral perhaps? I think it's Dr Gupta whom people recommend for SS?
Especially as the rheumy you see at the moment is just sitting on the fence prior to retirement! X
I vaguely read somewhere on the internet - 'so it must be true' - that if you're drug sensitive then lesser doses of drug can be more effective with controlling illness ????
I'm really sorry to read that things are becoming worse for you.
What about an Lupus Specialist with as many degree's as possible? At the very least a Professor.
Biopcying the bits of you that are being effected might be a way to get an answer - kidneys are very handy for this.
In a weird space myself with Prednisolone. Was on it for 34 years, now I'm off it - even though initial tests show my adrenal's are producing cortisols - I'm near flaking out without it. When my specialist told me to go back on it anyway (5mg) - I felt like my brain was going to explode from adrenaline/anxiety - making my Blood Pressure sky rocket (not so good for fragile kidney capillaries)
Gut pains & Squeamish on Myfortic - had to reduce it - and BP meds zombiefying. Everything's been kept to its barest minimum.
Thanks for your comments Freckle, I remember we were very similar re symptoms etc.
So sorry you are struggling majorly yourself. As you said, Damned if you do, damned if you dont!!!
We need some new inventions I think , pronto!!
Have had an awful week after the colonoscopy and steroid injection of Depot Medrol the week before. Rheumy wanted me to reduce the Pred after the injection, which I did ,then ended up with a kidney infection and a biliary infection both together.
On mega doses of Cipro now and back on the Pred and today very weak and wobbly but at least feeling wee bit more human. I was getting husb to pack a bag for hospital late last night!!
I did actually have a Prof, expert on liver diseases who was superb, but he retired a year ago and my Rheumy is retiring too so time for new blood.
Twitchy has given me some ideas on whom best to try ,so will find out what my GP thinks on Monday.
Like you though ,drug sensitivity shuts many doors for us ,even if we do get the drugs available.
Hope you feel a lot better soon.
Cutty X
This is why some people with rheumatic diseases end up on the big gun biologic infusions such as Rituximab. They target the B cells rather than suppress our entire immune system - and this can be very helpful for those with severe drug intolerances too. It seems so wrong that people who are seronegative for some CT diseases such as lupus and Sjogrens aren't offered these whereas friends I know with seronegative RA are offered them. But then their RA can be confirmed by imaging of joint erosion or Rheumatoid lung disease - so I guess that's why Freckle's suggestion of a biopsy can be helpful for those of us who don't have seropositive bloods but do have plenty of symptoms of a disease.
In my case this was by having a lip biopsy, but I have read that these are also often compromised by steroids and immunesuporessants. Not sure if this also applies to biopsied taken from organs though? And I would not have agreed to the lip biopsy if my ANA and immunoglobulins hadn't finally shown positive. TX
Horrible nebulous digestive tract stuff........nebulous is the word - forever chasing down immune activity.
Having (yet) another gastroscopy in a couple of weeks. Humbug.
(a gp wanting to test his helicobactor bug/ SLE induced - deteriorating & collapsing lower stomach lining theory) I really think its the medications myself.....he's very esoteric.
It really sounds like you've been to hell - and you're not quite back yet. At least you're feeling like a semi recovering human.
Having your bags packed for hospital is not a good place to be. Its the terrible and sometimes terrifying uncertainty. I hate having the bags urgently packed and wondering whether to go or not.
Really hoping you can get a break from the horror for a little while. It's been so full on for you.
Extreme ditto to you. Please be feeling better soon !
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