Off Hydroxichloraquine - not sure what next.

Mat48

Hi - haven't been here much lately. Things haven't been that good and I didn't want to be a bore or a moan so I stayed away.

By the end of last week I could barely function for fatigue and the hives/ rash on my face, neck and one shoulder had become intensely painful - like I'd been dunked in a nettle bed face first :roll:

I saw the GP who suggested I stop taking Amitriptyline for starters and gave me yet more antihistamines to try and suggested I take Ranitidine in case the rash was connected to my gut. We agreed that the only DMARD I'm on currently, Hydroxichloraquine, seemed to be doing a good job on the RA/ arthritis so should leave well alone. I had taken it for a year previously with MTX and, after a brief period of severe face rash when I took it on MTX day - all settled and it seemed to be the one drug I have been able to tolerate well so far. I was put back on it by my rheumy consultant to "buy us some time" in November and bizarrely - it seemed to have put my RA into remission this time!

So on Saturday, after another night of painful itch on my face and with eyes needing drops every 30 minutes again, I suddenly decided to stop taking Hydroxy to see what happened. I have had no joint pain at all for months but the rest was just becomiing intolerable and my face was really swollen and lips kept swelling off and on too. I know I wasn't having full anaphalactic shock or anything but felt I might be heading for something disastrous if I couldn't get to the trigger. Husband was getting seriously concerned because I was swelling up and down daily and so blotchy and miserable. Also my first dermatology apt of this week was cancelled when the clinic was postoned.

Three days later and my skin is almost back to normal. The painful itch (like severe stinging nettle rash) has died away and the fatigue has lifted - I'm back to my tired and grumpy old self again now!

I really, really don't want it to be the Hydroxy because this drug seems to work for me somehow. But facts are facts and I think another DMARD (my third) has probably bitten the dust. My GP says she agrees and we will see if it's just a coincidence but I don't think it can be? Simultaneously the aches and stiffness have returned this morning and I'm hobbling about again. I get bloods taken on Monday and see my consultant again a week on Thursday so I guess it's probably back to the drawing board.

The idea was that, if I got widespread swelling and pain again I would have to try a Biologic but I'm not sure if simply not tolerating a DMARD counts as failing a drug? I think I should probably just put up with my apparently non-erosive RA using pain killers and NSAIDs and the odd steroid injection as and when required. I don't think I can face trying anything else but perhaps this is foolishness? Has anyone else not tolerated MTX, Sulfa and Hydroxy but found a different DMARD that works for them without terrible side effects? I will put up with a few but not if they involve having a painful and swollen face for months on end. I was wondering about GOLD or the one starting with A..? Forgive my incoherence - no sleep at all last night. Mat x

barbara12

Hello Mat
The forum is going off today for a couple of days, I didn't think it would be on this morning..but just popped in and saw your post..I am so sorry you are having to or at least thinking of giving up on your meds...what a rotten decision for you..it would be so much easier if they hadn't work this good
Sorry I cant offer any help..I really wish I could, but you keep talking to us and I hope your Rheumy find something that can help...(((()))xx

Mat48

Thanks so much Barbara - and thanks too for warning me about the temporary shut down - I'm out of touch with things just now! x

barbara12

Hi Mat they did say today and tomorrow suppose it will be this afternoon now... :? you look after yourself..x

Boomer13

Hi Mat;

I am sorry to read your news. Your symptoms certainly are not making treating your RA straightforward, are they? How frustrating! I believe not tolerating a DMARD is considered the same as failing one, at least where I live, so perhaps anti-TNF therapy could still be an option? I hope so.

I've also heard of some people with RA having luck using tetracycline antibiotics as a DMARD. Haven't really looked into it myself and you likely know about this already but I thought I'd mention it. It is certainly not a mainstream treatment and likely to be frowned upon.

I had luck with joint symptoms in the beginning, by taking both aspirin and naproxen but it was very hard on the tummy. And of course, did nothing for the fatigue. I can't remember if you have tried other newish types of NSAID? They seem to be helpful for some people.

Sorry, not much help.
xxAnna

Mat48

Thanks Anna. I haven't tried or been offered the new type if NSAIDs - is this what is meant by Cox Inhibitors? Like you I'm very nervous of the anti- tnfs with all my intolerances of drugs in general - but unlike your PsA I don't think my RA is bad enough to warrant these and so I really don't think I would meet the criteria at present. Still we will see.

I did do some research into the antibiotic approach some time ago. It does seem to work but takes a pretty long time to halt disease activity - by which time the disease might have done some serious damage. It wouldn't be an option for me because it takes a specialist who will monitor it and they all seem to be based in the States. I can't even afford a day trip to town these days let alone going private and far afield for a controversial slow acting type of treatment! :?

So I'm mightily hoping that my RA is as meek and mild as a lamb now and will look into some of the older DMARDs (can't recall their names apart from GOLD) and the newer type of NSAIDs. Gut problems are an issue so my rheumy won't let me try Leflunomide and I'm rather relieved about this too although I know some who do very well on it.

Take care Anna - sorry to be so self preoccupied. I really hope your husband is going from strength to strength now and your days as carer are coming to an end and all the snow has melted away? Xx

Boomer13

Yes, I was thinking of Cox-2 inhibitors.

Was the other DMARD you were thinking of Azathioprine? I'm sorry I don't know anything much about it, except the name.

I'll update my thread regarding the saga of pain and snow In the meantime, fingers are crossed that your rheum can come up with a good plan for you :?: I hope so.

xxAnna

Mat48

Thanks Anna. I suppose a large part of me expects to be dismissed out of hand by the rheumy now I've proved useless with even the mildest of the DMARDs - despite it apparently working rather well. Still maybe 8 days more off all meds will make me feel more...realistic? Having been so focussed on painful, itchy skin and other stuff it's a bit weird to be thinking about RA again but maybe I'm just back in denial land where you know I tend to flourish :roll:

And yes it was Azathioprine I was thinking about as well as Gold. I know my GPs have mentioned both before but no no-one who takes them.

Your downcast smiley worries me a rather - do let us hear your news soon however bad please. X

Starburst

Mat, I'm surprised that your rheumatologist was willing to prescribe MTX but not leflunomide. They are similar in terms of how they are metabolised and side effects. I found it a great drug and have no side effects. Azathioprine is also meant to be quite good in terms of side effects. My mum is it on for ulcerative colitis with no problems. My local area are really stingy with anti TNFs, they expected me to try and fail as many DMARDs as possible before they'd consider funding. Side effects are a real bummer but it's worth trying another DMARD before considering anything drastic e.g. not taking any form of anti rheumatic drug.

All the best of luck x

Mat48

Thanks Sophie. I know you are going through the mill with your drugs so touched that you've replied

I think the trouble with Leflunomide is that it can have adverse affects on the GI system and that is one of my weak spots so I guess that's why my rheumy was so adamant about it - although I was quite surprised too. Also, if a person is unlucky with Leflunomide side effects it takes a long time for this drug to leave the system compared to other DMARDs.

Perhaps I will just go back onto Hydroxy on a lower dose with another DMARD as I was before with MTX? I'm quite willing to try other drugs if he wants me to. I've not been very well since I stopped MTX seven months ago with a variety of symptoms so I know that my immune system is overactive again but just not sure how destructive this might be with me. If it's all just symptoms but not erosive and not actually damaging me then perhaps I should just weather them rather than risking further unpleasant side effects. I'll let you know what the rheumy says when I've seen him.

It's good to know about other drugs such as Azathioprine. I also feel this one might be worth a shot if my rheumy agrees that I need to keep on something. My concern with Hydroxy is that I've had a lot of other stuff going on but it isn't sufficiently toxic drug to require monitoring. This is greatly in its favour of course in some ways but it is also a relief to feel that people (in my case GPs) are keeping an eye on the bloods etc.

Got to travel south for a job interview next week and only return hours before my appointment so it could be a testing time! Mat x

dibdab

Hi Mat, when I was struggling with DMARDs because of a lung problem my rheumy tried me on old fashioned gold injections, and happily my GP agreed to fund/administer it weekly. Sadly it didn't work well for me, it had a promising start then I got a chest infection, had to miss a month and it never kicked back in. But the rheumy did say it works well for around half the people who try it- they are less likely to prescribe it now because it has a lower success rate than the newer drugs- but he thought it worth a try.

Hope you get some help soon.

deb x