Hi all, this is my first post, I suffer from Rheumatoid arthritis and because I also suffer from Bronchiectasis, COPD, the Doctor's say I must stay on 3 x 5mg predisolone tablets, there reasoning being that most Jack Inhibitor Treatments will severely reduce my Immune system, which would make any treatment I needed for a possible chest infection extremely difficult.
Just to let everyone know, I have tried most of the tablets currently used to treat my condition, but they gave me very bad side effects, thats why I was hoping to go onto the Jack Inhibitor, as I've heard that it produces fewer side effects.
I suffer also from dizziness almost every day and recently I have read that Steroids can also make you Dizzy if you have been on them a long time.
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Chanelady
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Has your consultant said this or your GP? We are not medically qualified to give you advice but I can say I also have Cylindrical Brochectasis and take RA medications it’s never mentioned being of interest. I can only suggest that you go back and talk to your medical professionals as long term prednisone isn’t a good idea. You can’t have JAK if you’ve had like me PE’s or a D VT but I’ve never heard of Bronchectasis being an issue. Sorry.
I agree with Medway lady, that long term prednisolone is not a good idea. I have been on it for years, for polymyalgia and GCA, for which it is the only treatment. I have severe adrenal insufficiency as a result of it, I produce no cortisol, which was diagnosed after I suffered a severe stroke as a result of an adrenal crisis. I also have asthma and used to get frequent chest infections, I have no chest expansion as my ribs are fused, so infections can be difficult to clear. However I was out on biologics, and can honestly say I have far less bfections now, than ki used to get. I’m intrigued who states this, is it your rheumatologist or gp. I would certainly be insisting on something other than ores. At the dose they are suggesting, it will also suppress your immune system. I wouldn’t wish adrenal insufficiency on anyone, you wake with a flat battery, and it takes 2hrs for meds to kick in, being exposed to good or bad stress can make me very ill, and needing to use an emergency injection that I have to carry everywhere. Then there’s also osteoporosis, diabetes etc that come with using it.
Agree with ML& RR we cannot advise on the drugs you take …you must speak to your doctors…both your rheumy & whoever treats your COPD.
I also agree being long term Pred is not a good idea at all….but I also understand for some unfortunate people it is a necessity
You say you have been on the Pred dose prescribed by you present Rheumy, so quite reasonably you are seeking a second opinion.
As you have found….RA is not an exact science & it does take many people, especially if they have other health conditions, a long time to find the right drug regime…..so really listening to to your doctors is the best way to find what will suit you best.
I too have bronchiectasis and severe COPD as well as RA.
I am one of the lucky ones I think (touch wood). I was put on Pred to begin with and then as I gradually came off that I was building up on Sulfasalazine and taking Hydroxychloroquine too. LuckilyI had no side effects (although only been on them since March). I was told by my consultant that I couldn't have the Methotrexate because that would affect my lungs.
(I was interested to read Medway lady saying that having had a DVT precludes the use of JAK. I shall remember that as have had DVTs too.)
I hope that your rheumy team can sort your drug regime successfully.
I know it was news to me too but not to worry AZA and Benapali are working well so I’m in remission again. I’ve been lucky with meds and MTX was stopped after a couple of weeks before the clots years ago. Since then LEF was great then stopped for kidney issues although it didn’t cause them. That was in 2014 and although I have CKD with stage 3b failure life is near enough completely normal.
I have often wondered if I was 'put together' on a Friday afternoon...........much like those washing machines that are made at the end of the week and keep breaking down!😂
Not really it’s all just one of those things, I can’t change it and being bitter doesn’t do anything either. I had a medical injury ( not an RA med) and so just enjoy my near enough normal life. Somethings like energy can be an issue but only if say I tried to walk 5 miles which I used too but I recently bought a scooter for trail walking. I can do shopping centres as can stop for a coffee then restart. RA can be difficult but I think I might be lucky as have the pANCA gene so antibodies at a nucear level. So it just might be a truer form of RA and easier to treat because I respond to medications well. It’s all just part of life’s journey and although now retired I had a career that enables me to sit and very good employers. RA never held me back so its impact has not been huge. I reckon I was made of spare parts but they fitted together fairly well.lol xxx
I take both a JAK inhibitor and oral prednisolone. I've been on oral prednisolone for over 5 years, I just can't do without it no matter what RA meds I am on. Not everyone gets the side effects from any medication.
I tend to go with what helps me now, to improve my quality of life on a day to day basis. The future is the future I can't live for what might or not happen as I might deprive myself of a better life now for something that might not happen.
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