Kenalog and Hydroxychloroquine.

[AJOC4]

I'm new here. I was diagnosed with Systemic Sclerosis eventually 3 years ago after having had the symptoms for over 10 years. Started on Kenalog injections which relieved the pain in my feet, stiffness in limbs, aching joints and tightness in my face almost straightaway but wears off after 2 months. The Rheumatologist wants me to stop the injections - I don't understand why - even though I get really good relief and no side effects. I had to stop Methotrexate because of raised liver enzymes. Now started Hydroxychloroquine 2 x daily with meals but I get really bad acid stomach, sickness and diarrhea so much so that I sometimes can only manage one meal and one tablet and then have to take 5 days off to let my stomach recover and start again. Anyone else have experience of Hydroxychloroquine and is it worth persevering with it?

[Duttie]

Hello, you sound as though you have been on a similar journey me, although I have had SSc for 30+ years, but was diagnosed the RA as well last year. I have had Kenalog into my bottom as well as directly into my swollen foot - inflammation of the bone marrow. Kenalog is a steroid which is why its use is limited. I was also put on Hydroxychloroquine, which made my dry mouth, Sjogrens, even drier, to the point where it became so sore I couldn't eat. I was taken off it, but my foot is now so swollen I can hardly walk and my hands and wrists are very painful. I am considering asking to be put back on it as the RA is getting much worse, and I don't think the Rheumys think the dry mouth was linked to it. Best wishes, I think you need to speak to your Rheumy about the side effects.

[AJOC4 in reply to Duttie]

I've got a hospital appointment 20 July. I'm still hoping for a Kenalog injection but will try back on the hydroxychloroquine. Thank you for your reply.

[SheenaC]

I have been on Methotrexate for years. I was on 10 tablets per week for a long time - now on 8 weekly. I seem to tolerate it. I take it on a Sunday evening . I take 1 Esomeprazole tablet daily to help protect my stomach as I also take1 Hydroxychloroquine (purple stripe box) and 2 Sulphasalazine daily for Rheumatoid Arthritis . I also take 1 Folic Acid tablet for 6 days (not Sunday) - it's supposed to help with Methotrexate. I feel sometimes that all of the above don't really take away the pain and stiffness. Sounds as though you are maybe a lot younger than me (I am 81) - I was diagnosed with Schleroderma in 1998 and RA before that and Raynauds quite a while earlier. I don't know if any of the above is helpful. New drugs are being developed all the time and we can but hope for a better future.

[AJOC4 in reply to SheenaC]

Thank you for your reply. I take omeprazole rather than esomeprazole and I've looked it up and they work differently. Maybe the one you take will be more helpful in reducing stomach acid. Very helpful.

[AJOC4]

I think I will try weaning myself back on the hydroxychloroquine. Thank you for your info on Quinoric which looks like the one I am on. Very helpful.

[MFC911]

Hi,

I have been on hydroxychlroquine now for eight years plus.

When I first started I had similar problems. After much research discovered that certain brands use different binding agents to others, ironically some of these binding agents are positively detrimental to scrleroderma suffers. The one brand that I have found consistently works causing me no problems at all are "zentiva". If your pharmacist can get them for you I think you may find them beneficial.

Stick with it, the benifits will outweigh the side effects once your system settles down.

Good luck. Regards. Mark.

[GGhere]

Hi AJOC4 - I've had similar experience as you, symptoms for ages and then a long wait for a proper diagnosis. I was put on hydroxychloroquine from the very beginning. I have to alternate the dose 1 tablet one day and then 2 tablets the next day and so on. I've been taking it for 3-4 years now without too much distress. I have odd days when my insides feel awful and then I bounce back again pretty quickly. I've done a bit of research obout this drug and found that it's one of the earlier ones prescribed for our condition and some consultants prefer it because it has the least side effects. Maybe you would cope with it better if you did the 1 and 2 alternate days rather than not taking if for several days.

[01268 in reply to GGhere]

If it is any help; I was told to take one tablet one day and two the next but I bought a cutter from chemist and cut some tablets in half and take one and a half tablets a day, I have been doing this for three years and its helped me

[AJOC4]

Hi Bestie, I've discovered it's the Quinoric brand from Bristol Labs that really upsets my stomach because by chance my pharmacist gave me a different brand Blackrock. I don't think Quinoric has as good a coating as the brand Blackrock which is interchangeable with the popular brand Plaquenil. Gastro problems and Systemic Sclerosis go hand in hand unfortunately.

[MFC911]

Hi,

I had the same problems with Hydroxycloroquine. After many hours of hard work and researching the subject. Endless emails too and from drug companies. The conclusion was that the problems are not caused by the Hydroxycloroquine itself. The problems are caused by the binding agents that the drug companies use to manufacture the tablets. I went through a lot of them. End results were: "Quinoric" is absolute poison avoid at all costs. I won't boar you with the rest. The best one by far and the only one I can take is:”ZENTIVA" brand. Get your pharmacy to order them and them only. I will have a bet with you that your problem will be gone.

Good luck. Best. Mark.

[MFC911]

Hi, I have been taking Hydroxichloroquine for years. I also take (amongst many other meds) Lansoprosol to prevent the stomach problems. I find it works really well. If you can stick with it then I would say do. It may take some time to let your body adapt to it but the advantages far outweigh the inconvenience (sorry not trying to trivialise the side effects in any way). Ask your Dr for something to help you stomach lining and Persevere

[Redwine53]

I am on loads of medication as I have systemic scelerderma, Raynauds,lupus and myositis.I take hydroxychloquine twice a day and have some not so good days stomach wise. However I have found eating an Activia yoghurt after the morning pill seems to work most of the time, followed by breakfast and my steroids .

Never had any problems with the evening one.

Thanks to everyone for all the useful info about the different brands, I checked and I have the Zentiva brand, so that’s great.

Good luck with sorting it out, it seems to be a great drug.