Was on hydroxychloroquine for a few months but things seemed to be getting worse so I started sulfasalazine in addition. Honestly tried to be patient but sulfa made me feel so dead and headachy and miserable that rheum. nurse told me to stop taking it.
She sent me all the info for methotrexate and I am having a chest xray on 28th and have just had a blood test today - in preparation. So for about 2 weeks I have only been taking 200 mg of hydroxychloroquine. My question is has anyone else gone though this progression and does anybody know why I am to carry on with hydroxyc. if it doesn't really do anything? I read somewhere that it works well with other meds, but I'm not on any so what is the point?
I reckon that by the time the xray is done and I get the all clear another 3 weeks will have passed.
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Brychni
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So I’m on Sulfasalazine, MXT and about to start a biologic. My rheumy says keeps taking it all and then when the magic formula is finally found then we drop this or that carefully. Good luck starting the MXT. I hope it helps big time 😁
I started SSZ in addition to MTX which has been reduced to 15 mg. I'm on week eight now and feel completely lifeless, achy and c--p and I'm not sleeping well which I don't usually get a problem with. I know it takes about three months but since starting it two of the joints of my right hand have gone bulbous and look quite affected so it looks at if it's not doing anything at all at the moment.
With the Hydroxy maybe it is doing something even if not enough for you to notice and stopping it might make the condition much worse as you are not yet on MTX and it's going to take about three months to take effect once you start it, so it may be a better than nothing thing. Just a thought. x
I've been on Methotrexate and Hydroxchloroquine from the beginning (recently added Sulfasalazine) and a rheumy registrar told me that the Hydroxchloroquine was more of an "enabler" than anything and helped the Methotrexate to work better. Although things aren't perfect yet (hence adding Sulfasalazine) the Methotrexate and Hydroxchloroquine definitely helped so I hope that they work for you too 🤞😊
I would say that it is good to be on something whilst you are waiting to start MTX. From what I understand a combination treatment often works much better too.
As you know I have been on Sulphasalazine for a year now and four weeks on MTX and I have really started to see some improvements already with this combination for me.
It’s hard waiting for the tests and then to begin treatments as we are so keen to get onto them. Hopefully only another couple of weeks before you get the okay to start on MTX. x
Hydroxy mtx and suplha work better together. I was on triple therapy before biologics were invested.
You say it's not doing anything but if you stop it you could find out that it actually was helping, just not enough. Hold on for a few more weeks and hopefully the mtx will get you on the right path.
How long were you on sulpha? Because I think everyone feels unwell on it at first but the side effects go.
Please be patient. I started off with Sulphasalazene and mtx but I later developed lupus for which my doctor prescribed hxc which is good for skin sensitivity. Then started with biological that actually was the turning point. To prescribe bios they have to try with at least I think 2 meds and if that doesn't help bios will be introduced. A positive mind is so important.. Light exercise. I know it seems so bleak.... But try it for sometime.. If it doesn't work... Go back. I am now on bios, mtx and hxc. Mtx when started I felt sick but it was the same with hxc also so I was given lower doses. They should be able to adjust the dosage according to your needs. Good luck.
Hi. Yes they will try different combinations with the dmards as they have to follow a protocol first to use disease modifying drugs first . I was on a combination of two or three at times and then moved to biologics.
Mtx is gold standard treatment so a lot of people find it great !! You need to take folic acid as prescribed too xx
In my experience hydroxy did naff all except count towards my try-two-DMARDs-for-6-months barrier to trying anything else. It's cheap, doesn't do much harm, and in some people it works 🤷♀️
My rheumatologist told me it is one of the oldest and effective meds... See the hype it created for this pandemic 🙄😅. But you are right. It's effective only for my lupus I think . Despite being brown I get sunburn 😱. But when I started it 2 tabs a day I felt ill... Couldn't breathe... But that was at the start of my ra. Then she put me on sfs and for lupus 1 / day.
I was on sulfasalazine it made me so ill . I was like a zombie lost appetite nausea head aches they took me off it after about 8 weeks . Went on hydroxchhlorquine lot better after about 12 weeks then methotrexate then took me off hydroxychloroquine then put me on benepali all in all 2 yrs of not good but now I am back at work things are good so hang in there we are all different good luck x
I was on MTX and hydroxy together in the early days, but I never felt the hydroxy helped at all and it made me bruise easily and feel queasy. I was taken off it when I moved on to the biologic Cimzia and reduced MTX dose. That was 5 or 6 years ago and touch wood have had a massively improved quality of life since. Good luck on your journey to getting the meds working.
I was prescribed hydroxychloroquine with methotrexate. I was told they're often prescribed together to more effectively reduce the symptoms of RA and that, specifically, the hydroxy would help with the symptom of extreme fatigue. I can honestly say this treatment has helped so speak with your medical team to get more info that will better inform you. I so hope you're able to benefit.
I also looked very carefully at my diet and this has helped me also, although I'm constantly told that 'there's no scientific evidence' towards it. Also each case is different so what might work for me may not for another. There is some evidence out there though re: anti-inflammatory. I don't diet or miss out on anything and I don't rattle with expensive supplements. Worth, again, speaking to someone qualified to find out.
Reduction in meds isn't recommended without the required good results in blood tests for five years but I've now been able to request a reduction in methotrexate and I'm hoping this will still achieve the same results but time will tell. Watch this space!
Let me know how you get on? All the very best wished for you.
Thank you Melys - I will post updates as I go along. I'm still at the stage where I am struggling to justify taking such strong meds because I am not in as much pain as other members. I do understand that they want to knock it on its head before it gets bad but it's hard to get my head around. Also, I do suffer the worst pain in the world from cluster headaches and migraines and getting that under control is my priority. My joint pains and aches are nothing in comparison. It has crossed my mind that RA/PsA (was diagnosed with Undifferentiated Inflammatory Arthritis) may be the underlying cause of the head problems which is the reason I am even entertaining the idea of methotrexate. Sulfasalzine unfortunately just made the headaches worse. I often end up completely out of action for as long as 8 days and the sulfasalazine was just exacerbating the situation. When I start the methotrexate it will be in the hope that it cures the cluster headaches.
I understand your dilemma about taking these strong medicines. I spent months agonising but the potential complications of RA swung it for me and I was quite severely debilitated with RA. Whatever decision you make has to sit well with you but I would recommend speaking to someone about potential consequences of taking v. not taking the meds.
Brychni & Melys, thanks for coming back, I guess we are indifferent places, on the same page with not knowing to take as prescribed by GP's. I don't have the headaches and migraines, which I take down to drinking plenty of fluids and keeping hydrated, lots of water, juices(watered down), I just drink white wine if I do drink alcohol drinks, eat grapes and limit fruits, do three carb meals per day or one big carb meal a day, limit veggies, cereals, meat and fish mix but small amounts. Very occasionally red wine for anti-oxidants, occasional fruit /mixers but tend to stay away from spirit or high percentage alcohol drinks. I take or add turmeric to my diet about once a month, and add oregano to potatoes, pasta, and eat pizza about once a week. I exercise every day, just stretches or a walk or a short run or a short swim or aqua class, housework, cleaning etc . I don't go all out for gym and long exercise anymore as I am getting older/and we are in lockdown in UK. I just worry about hidden fat, salt and sugars in supermarket food. No idea if diet is an issue with RA or Lupus which seem to be similar and on the leaflet for Hydroxyc; there is so much information out in the internet for diet and RA, I just do what feels right at the time given what is available in my local groceries store and supermarkets. I find small amounts of chocolate help as well, just biscuits and bars. What I am concerned about is the prescribed Hydroxyc and diet/consumption of food, as well as, what Hydroxyc is doing to my body and immune system. However, all this worry aside, my GP doesn't not prescribe without bloods or eye tests, so again Hydroxyc for the near future. Am now just 2 weeks in and not sure if it's helping my joints at all, but hope that it does do something in the long term. Today my hand joint pain has been ok, have a few joint twinges, but nothing out of the ordinary. (I have back pain / period pain) not been prescribed Methotrexate or Sulfasalzine and have not read anything about those meds. I wish you both luck, I think best keep talking to our GP's and Rheumatologists as and when.
Hi, yes agree, I think, but not sure if I have given it enough of a go? I took hydroxyl last year for a few months and didn't even know if it was helping; it just made me feel a bit sick when taking it (on a full stomach or after food). but I have just started, because I have been feeling twinges in my hands and feet, it isn't even the winter months yet. where I find the pain increases. Interesting comment below about Hydroxyc being an 'enabler'. My rheumatologist explained that Hydroxyc needs to build up in your system and can take a few months to build up. He explained it can push back the onset or start of the degeneration in the joints and bone areas. But I am just at the start of my RA journey, and am still rather confused about it all.
Sounds as if we are at the same stage SriShell1920. I have read similar about hydroxy but wondered if that was reflected in real life. I get those twinges and I know that after they die down, they will come back nastier, sometimes weeks later but always a little bit worse than before. The gaps in between are getting shorter. Occasionally I have had real agony, had a really bad shoulder during the night a few weeks ago, thought I was having a heart attack! What I am noticing though, is that the along with twinges and occasional stabbing pains in my hands and wrists (along with stiffness in my fingers) my arms, shoulders, elbows and especially wrists are 'weak' I can't easily pick up a heavy pan for example. It's odd because I do enough exercise to keep myself strong, I mean I shouldn't have weak muscles as I lift small weights (while kettle is boiling!) and am mindful that it's important at my age (49) for bone health - I mean I'm not pumping iron but I take care to stay strong so I can' understand why my arms are so weak. Particularly annoying when I have always maintained tha exercise will help reduce symptoms - seems it doesn't.
I also have the stabbing pains and have difficulty holding pans when cooking too. Then other times I am strong and can do it no problem... so good to know there is someone out there who has the same thing; I read your post again and can really identify with what you wrote. I also have a shoulder problem, and have to stretch and click it out to feel stronger again, that's why I do stretching in the morning; just some mornings I feel very weak and in pain. RA is weird some days I feel "whay hay hay" 30years old again, ready to go and some days I feel like I am 90 years old, and need a walking frame to help me get out of bed. I am going to stick with the GP prescribed Hydroxyc, in the hope that it will do something to help in the long term, let you know how I get on. Do stay safe and take care
When I was first diagnosed with RA I was put on Hydroxychloroquine. This medication caused problems with my liver function. I then started SZ & have been on it for a long time. Initially I started on a low dose & increased it gradually over several weeks. I've not had any side effects. It works for me. It doesn't start working immediately so you may not feel the benefits for a couple of months. Everyone is different & you may feel the benefits sooner.
I have been on sulfa and hydroxy for about 20 years, tried methotrexate but was unable to tolerate it. Last year stopped sulfa for 3 months due to ongoing ear infection and things became unbearable constant flares not knowing from one day to the next if I would be able to function. Being on my own this was really scary and was glad to get back on sulfa just give it time if you can
I’m on hydoroxychloroquine and methotrexate and think they work really well together, I started on both right from the start of my RA 7 yrs ago, methotrexate takes quite a while to work I got worse before I got better it was a good 6 months to a year (sorry not trying to be depressing) but now it really keeps my RA in check 🤞🏻Make sure you drink lots of water as it’s not so good for your kidneys and liver but you will have regular blood tests to check on them, I drink 1 1/2 litres a day (Plus Cups of tea and coffee, wine etc) and so far so good. Hope this is helpful and good luck.
It's interesting you say it got worse before you got better. I suggested that might be the case with hydroxychloroquine after about 4 months and asked the rheum nurse if I should continue to give it a go but she said no and then I started the sulfasalzine. I think they are frightened of not nipping the RA in the bud. x
The problem is everyone is different and everybody I know who has RA seems to have a doctor with a different answer. I have no experience of sulfalzine so I can’t help you there. When I 1st got RA it was just in my right hand then spread to my left I literally couldn’t write or pick things up, chopping an onion was impossible. It then went down to my feet and I got to the stage where I couldn’t even walk to the bottom my garden ! My consultant explained that the methotrexate would take a time to work and to persevere it probably took up to 18mths 2 years, this morning I went on a 5 mile walk I can now cook etc without problems (although can’t do very heavy saucepans, I do have a problem with fatigue but I make sure I have a snooze every afternoon. This horrible disease won’t disappear so be kind to yourself and learn to live with it, do push yourself to do things you want too but also give yourself time to rest and recover. One other tip about methotrexate it’s also not very kind to your stomach so either ask for some tablets to help or have it by injection ( I learnt that the hard way ! But that’s another story 😆) I hope that’s some help. X
I’m now on SSZ and MTX and also Benepali. When I was first diagnosed in had SSZ, then briefly added in Leflunomide (liver problems). MTX came next then finally hydroxychloraquine. Had these three for years until I had breakthrough episode which really laid me low. Couldn’t walk or use my hands and arms. So much analgesia I was barely awake and always in excruciating pain. Finally got Enbrel, changed to Benepali on cost grounds. Miraculous recovery...!!! Hydroxy slowly withdrawn, then MTX reduced and finally SSZ reduced. Now well controlled, largely, some episodes of pain, fatigue, and reduced mobility from time to time.
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