News in general..

Mat48

Hello people I know I haven't been on here for many months but felt like a blether as they say in these parts. I think I last posted shortly prior to my drug break back in March. I had a month off Hydroxichloraquine and injectable MTX 17.5 because the side effects were getting me down too much. The idea was that I reintroduce them one at a time after a month off - my rheumy did not support this idea but with blisters up my nose, dry eyes and weird pink spots all over my face and a permanent foul taste and nausea I felt I was slowly sinking into a pot of deep gloom and something had to give. I had no joint pain or stiffness at all apart from the usual morning stuff in hands and my ESR was sitting at 26 for about 5 months.

So with my GP's support I came off the meds but then had a really rubbish drug holiday because after a few weeks my scalp became extremely itchy and a high abdominal pain began. After 3 weeks my right wrist started playing fracture and my knuckles all swelled up and then my shoulder and elbow on same arm all started joining in too. So I went back on the 17.5 Metoject but was advised to dump HXQ for the time being as it didn't seem to make any difference to my ESR or my RA.

After a few weeks the foul taste returned and so did the nausea but I did at least successfully zap the itchy scalp with Betacap. As I also was having a lot of tummy problems too I was put on Omaprazole 40mg per day and the day after my MTX I got very ill indeed so stopped Omaprazole and started Ranitidine which I've remained on and has kept tummy problems at bay.

I had an abdominal scan which was okay apart from one large gallstone which has been there for 12 years or more and a cyst on my kidney which they finally decided - after much consternation trying to find the top of it - was thought benign.

By this time my GP had written to my rheumy and it was decided to let me drop to 15mg and see how things went. So I had a month on 15mg and that was still causing the same foul taste and nausea so I dropped a few weeks ago to 12.5mg injections. At last I'm free of nausea and foul taste yipee! But I'm feeling pretty stiff and achy again - especially around my lower back, hips and knees. So now, having tried Sulpha and HXQ I find I've reached the end of the road with DMARDs, apart from the lower dose of Metoject, so I'm being assessed for my DAS in six weeks time to see if I qualify for anti-tnfs. I don't think I will as I feel my RA is quite moderate in it's activity but perhaps I'm just kidding myself. I don't know if the 12.5 Metoject will be enough to hold the RA at bay or not - really hope it is.

The stiffness might well just be wear and tear i feel - which I do suffer from I think - although I've never had an MRI or an ultrasound of joints so it's all guess work. I see my rheumy next in August and it will be over a year since we have met. I have a lot of faith in him as he's the senior consultant who diagnosed me. I don't really want to start anti-tnfs as I don't think my RA warrants the big guns yet really but my ESR has never come down below 26 and was sitting at 32 at the last count. This is still half what it was before I switched to Metoject from pills so I know this drug works very well at a higher dose but the price for me is just too high.

Has anyone found their RA has been obedient and quiet on 12.5mg Metoject and should I settle for moderate disease activity or push to be on something else? I'm not keen on the idea of Leflunomide because I'm very allergic to drugs on the whole and also have quite high blood pressure. Mat x

stickywicket

Hello Mat. It's nice to see you again but you certainly seem to have been having a tough time with the meds.

In answer to your last question, I've been on 12.5 oral meth for some years. My disease is very calm on it but my disease is mine. It's that old sayin - we're all different. All my major joints have been replaced or have fused themselves so the rest certainly ought to be quieter.

In your situation I'd be guided by my rheumatologist. If your disease is active it probably needs something with more clout. Or something added. Meth and lef are sometimes used together. I know side-effects are a concern but, with all these things, we can only suck it and see. I hope you end up with something you're happy to take.

Mat48

Thanks for your usual brand of common sense SW. It is very good to hear from someone on this same maintainance dose but sorry it's largely because RA has gnawed away so much that there isn't much left for it to go for joint wise with you? I think I worry most about the systemic side of RA because mine seems to go for soft tissue and connective tissue as much as it goes for my joints. I did have my hands x-rayed looking specifically for RA erosion back in March but nothing flagged up. She said my hands didn't look like RA hands to her but remarked on the bony nodes on DIP joints and the amount of OA she could see. But there was nothing about this in her report because she said she just sticks to the request only so no signs of RA erosion was all. I think I'm presently wondering more about my knees though as they are so stiff and clicky and sore on stairs. Mat x

stickywicket

I think you'd need to bring all this up with the rheumatologist. My OA did set in early (hence all the replaced bits :roll: ) but that's because there were no DMARDS when I was first diagnosed. Meds' side-effects are a pain in themselves - or can be - so it's always a bit of a juggling act.

Mat48

This is something I haven't understood - the thing about degeneration and RA being unrelated? When I mentioned lower back pain to a different consultant in January it was dismissed out of hand as "just wear and tear" as if the two are completely separate? But for me they arrived in tandem and it can't just be coincidence that the aches in my legs and trunk go away when I'm on the higher dose of MTX and return whenever I drop doses again. My finger OA also flares when my RA flares.

I have passed this thing about stiffness of hips and back onto my consultant by email so it will hopefully go onto my notes at least and I will certainly mention it when I see him. He's more pragmatic than his junior was. I think this secondary OA is often overlooked in relation to dmards but to me its completely obvious as you confirm. X

dreamdaisy

The meds for an auto-immune arthritis will not affect or alter possible OA in affected joints as that is a very different beast. I think your pain diminishes on the higher dose of meth because it's doing its job in controlling the RA. DD

Mat48

I agree entirely DD - the Metoject works brilliantly for me. But I'm allergic to it once I reach 15mg and I've given it 18 months to settle down. I can hack everything from blisters to nausea for the sake of my RA - however the foul taste is something I can no longer tolerate. It is like sour milk combined with rusty metal and it is so bad the day after I've injected 15mg or over that I wake up gagging and continue to do so throughout the week to a greater or lesser extent. I can no longer taste food or smell things. It really is impacting on my life detrimentally and I have tried everything from chewing gum to saliva stimulants to endless oral hygene check ups (excellent oral hygene) and stomach scan. Nothing takes the edge off it until I get down to 12.5 where I am now and its gone. The nausea and blisters haven't but I'm prepared to put up with them - but sewer mouth 24/7 - no!

If I'm only in low level pain now - but nothing really excruciating then I think that's just what I'll have to put up with unless my rheumatologist says I qualify for anti tnfs when he sees me in August. Naproxen and paracetamol will have to do for the excess stiffness and pain until then and its not as if the MTX is out of my system as I'm still injecting weekly. But it is frustrating not to be able to tolerate a drug that works right enough. Fortunately I have a high pain threshold but unfortunately I'm a worrier!

dreamdaisy

Oh dear, I apologise for forgetting the salient details. :oops: DD