Hopefully light at the end of the tunnel

Maturecheese

It seems at last that the meth might actually be starting to work after nearly 11 weeks and the fact that he raised it to 20mg 3 weeks ago. I hope I'm not being premature as I still have 1 day left on 5mg of steroids but I am in much better shape pain wise than the last time I ended my 1 month stint on steroids. Obviously not totally pain free and some stiffness but nowhere near as bad. I have the senior reg on Friday so I'll see what he has got to say although as I've pointed out he is a bit aloof and you get the impression he's not listening, mind you the nurses on the other hand are great and easy to talk to. Fingers crossed I can start going to the gym again.

dibdab

That's good news, here's hoping you get the answers you need.

Deb x

Maturecheese

Thank you Dibdab

stickywicket

I do hope it's working. That would be great news.

Don't forget to factor in a difficult bit where you drop the final steroids. It might be safer to postpone the gym for a couple more weeks. Two weeks here might save four or five there, if you get my drift.

Maturecheese

Sticky I do get it, i'll mention it tomorrow when I see the Dr. Like you said though it could get a bit worse yet when the steroids are out of my system and today is the first day without them. Some pain and symptoms are back but hopefully not as bad. I have a feeling though that my crp levels will be high when they check them as there are signs. I know it sounds weird but when I have inflammation I get bright blue circles in my vision in the morning in bed when i move. Not consistent but just once or twice and this only happens when I am inflamed or my crp's are high. Don't ask me why as I don't know.

trepolpen

I hope you continue to improve & Meth is a good drug if you dont get bad side effects (sickness) with it , as for pain , think of it as your friend & telling you when you need to take it a bit easier , some of us will tell you pain killers dont work but it varies from person to person

with steriods you can have a maintainance dose if needed but talk to you consultant , and talk to them about exersize , dont go over the top in a gym , hydro pools are good

stickywicket

I don't think you should ignore the blue circles. I think they are probably totally harmless and can be relatively common with or without inflammation but I'm careful with eyes.

Very occasionally I can get 'halos' in the corners of my eyes. Apparently this is called ocular migraines or some such. Harmless usually but monitored at my annual optician appointment.

Maturecheese

Sticky Yes I'm also aware of the ocular migraines as I get them with triangular oscillating lines that block a lot of my vision, this is something different as I only get it when I have inflammation in my body. Also it's only when I,ve been in bed a while and only once or twice and very brief as in a blink whereas the ocular migraines can last 10 mins or more . I don't get the circles when I'm on steroids. As I said though don't ask me why because it doesn't make sense and If I mention it tomorrow I have no doubt he will show about as much interest as he normally does in anything off reservation. Anyway on the bright side it seem the meth is at last doing something even if it's not enough yet.

stickywicket

I guess a rheumatoogist wouldn't be very interested in eyes except for problems possibly connected with hydroxychloroquine and a GP would probably just refer you to an optician in the first instance.

I do hope the improvement is due to the meth as, that way, it's likely to continue.

Maturecheese

Well today seemed to go alright. I explained that I didn't think I could tolerate a higher dose of Meth (lightheadedness and headaches) and so if in future 20mg is seen not to be working he is going to put me on leflunomide as well. I'm a bit unhappy about that as well only because it'll put even more strain on my liver but hopefully it won't come to that. I had a steroid intramuscular jab today so with luck that'll keep the stiffness and inflammation away. Anyone know how long i'll benefit from that jab? He also did a blood test to check my crp levels so i'll be waiting on that result. He pointed out that my knees with probably need draining again in two months when I go back and that I'll need an op eventually. I can start going to the gym again next week but nothing silly. Also he grudgingly accepted that I could drink 2-4 units of alcohol once or twice a week so happy days.

So that's the current state of affairs and i'll see what the next two months brings.

barbara12

Wishing you well with the meths..and hope the dont have to add the leflunomide to the mix, rest on the bad days and get the most out of the good days..the jab I had in my knee lasted a few weeks , but the ones in my hands I got 6 months out of..

stickywicket

Maturecheese wrote:

if in future 20mg is seen not to be working he is going to put me on leflunomide as well. I'm a bit unhappy about that as well only because it'll put even more strain on my liver

Also he grudgingly accepted that I could drink 2-4 units of alcohol once or twice a week so happy days.

I like your priorities 8) It's good to keep these things in a 'normal human' perspective. I do hope all goes well for you. You've put your mileage in on the no alcohol front and deserve a break.

The jabs are a very personal thing. I usually get 6-8 weeks out of them but others get more / less / nothing. Good luck.

dreamdaisy

I found that the steroid jab in the backside of mild benefit for about three days. Injections into the joints never did anything apart from one which was for the OA in my right ankle, I had three good months then it wore off so why I haven't bothered since, I don't see the point.

It's not unusual to be on two or more medications to bring things under control, I agree it's not an ideal solution but it's not an ideal disease. DD

Maturecheese

Thanks for replies all, I typed a longer one out this morning but it's somehow gone. Perhaps I didn't post it properly i don't know.