Another request for advice / words of wisdom to help my OH.
He's now had his second appt with consultant who looked at the blood tests etc and said it's sero-negative arthritis, and so prescribed prednisolone starting at 4 a day for two weeks then 3 a day ... , methotrexate starting at 3 a week, then 4 a week up to 6 a week (I may have misremembered the numbers), and 6 folic acid a week.
Trouble is, although he felt ok from his joints for 4 days on the high dose of pred, today theyve started to be stiff and hurty again just like last time. Does this happen to anyone else and is there anything you can do about it?
Also, while everything else has been ok, 2 things haven't. He's had a horrendously painful thumb tip, accompanied by it going all blotchy and sort of a bit lumpy. I can't find anything about this anywhere. And he's had chest pains on one side, mostly at night. If anyone's had either of these and can suggest what they might be we'd be really grateful to know.
If it makes any difference, on the first appointment the consultant said there was something in his bloods that could suggest lupus (his dad had it) but he hasnt mentioned that again.
Thankyou.
Jenny
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Chickenkeeper2015
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Chest pains are always worth getting checked out, especially if it's on the left side, even tho' it is most likely to be inflammation of the ribs (costochondritis) that's another joyful aspect of inflammatory arthritis.
Sadly sometimes pred will only work at high doses, and if at all possible you are discouraged from continuing at high doses in the long term as the side effects are not good. Only you and your OH can tell whether the pain levels are such that it's worth pushing for an extension of the higher doses or whether he can tough it out until the other drugs start to work. With this disease everything is a balancing act.
And there's a lot of cross-over between this family of diseases, so you can have rhupus (RA x lupus) as well as the others and sometimes it takes time to determine exactly what you have. But the thing to focus on is whether the treatment is effective, not the name.
As for the thumb, sounds as if you should take it to the GP.
I was on 5 prednisolone tablets a day,but was still suffering terrible stiffness. My consultant prescribed an injection of depo medrone a slow release steroid and the results were instant.
I have been told to reduce my prednisolone intake by 1 tablet a fortnight whilst the Methotrexate and hydroxychloroquine kick in.He has told me he will give me another injection if i suffer a flare up rather than keep upping the tablets . Apparently you can have four injections a year if necessary.
Costochondritis springs to mind and i do get bouts of that which can come and go and be very uncomfortable. The thumb thing sounds to me like gout, it can be very localised but even for an RA sufferer the pain is very intense. I have no knowledge at all of lupus but MTX especially can be slow to work so try and be patient and give it a little longer. Hope your OH gets this resolved, im sure he feels glad of your support and understanding. RA can be almost as difficult for those around the sufferer who care as it can be for the person with the disease. Blessings.
Thank you all for your replies. I thought costochondritis too - come to think of it the doctor actually thought he had that a couple of years ago following chest pains - maybe that was the RA we just didn't know it. And LeonP - thankyou so much I think you're right! Not once in my searches did gout come up but it looks like that's it! Especially as he has the same sensations but not quite so bad in his big toe. Another thing to add to the list.
You're right about it being difficult for me too - mostly because I can't really help.
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