I am an IBD sufferer (ulcerative Colitis ) recently diagnosed with Lupus!
Starting hydroxychloriquin today! I’m struggling with joint pain skin rash and muscle stiffness, Big hair loss and major fatigue. Will this medication help me? Is there anyone in this medication that can give me some hope. Also my right leg constantly feels swollen and stiff with calf pain hip Pain and foot pain. I have restless legs at night and sleeping is interrupted with all of the above pains. I’m wondering If this is associated with lupus symptoms. Help!!! I’m new to this!
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Stickana
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Hi, I had colitis but now have a stoma. diagnosed with lupus a few years ago and taking hydroxy. I take it because it is supposed to help prevent lupus attacking my organs but can't say whether it makes any difference to how I feel. Still got a lot of pain and fatigue. maybe I would feel worse without it, I just don't know.
Awe you have a stoma bag now? How is that going for you? They offered me one two years ago but I’m still struggling in trying different meds. On venfulizumbab now. Entyvio. Seems to be helping so far only 8-10 weeks on it. Off the pred at least. But now lupus to contend with. Such an over Lap with the two aswell/ I’m going to try the hydroxychloriquin and good fir some relief in my joints. Xxx
pros and cons to the stoma. I wish I had had one at the begining of my colitis as my body would have been stronger and able to adjust but 20 years of being weakened by colitis and the drugs have made it hard for my body to adjust. I had reached the point where I had no bowel control so at least now I can go out [well pre covid I could] with the stoma it's more paranoia that I suffer from. I get convinced there will be leaks and constantly check the bag all day. but despite the lupus I feel healthier with the stoma.
I can imagine... the stoma bag giving me some anxiety too. Do you have a partner? How do they feel about it? My husband is amazing and just wants me well. He’s told me repeatedly to get the bag so I can be well. He’s very active, exe military and I feel bad I’m not anywhere as near as active as him or as I was years ago x
no I'm single, I don't have the energy for anything more. I would suggest finding out more from your doctors about getting a bag. there is always another option of getting an internal pouch done. I started with one of those but as my surgeon seemed to be of the opinion that a patient doesn't need to know anything that I ended up having the surgery at a different hospital with a surgical professor who, if he was present at my surgery, should be struck off in my opinion. it was a mess as my corrective surgeon said but they wouldn't put anything in writing or give me much detail so I couldn't sue. It should have been done a lot better but now having the bag I do have a better life.
I don’t know if this helps or not, but my dad had one for over 30 years. He had undiagnosed ulcerative colitis back then & had emergency surgery which saved his life. He lived a a very full and active life afterwards, it never limited him. He was able to eat almost everything. There wasn’t the treatment there is now for ulcerative colitis, but he was never ill again after he had the pouch. He and my mum took it in their stride and enjoyed many holidays all over the world together. He was one of the most healthy people you’d meet and stayed active well into his 80s.
Hi Stickana welcome to the forum. You will find lots of lovely people here who can give you support and help with their own experiences of this illness.
Someone asked a very similar question yesterday. Please see this link:
My leg is very bad this morning... stiff, achey, feels full and heavy like to bursting point. I spoke to my consultant yesterday and they are referring me for an mri scan in my back and button to see if my nerves/circulation are getting pinched?
Hi,I think so but I never relied on this medication or any medication solely. I always rested/rest, had/have fresh food such as veggies, fish and beef broth etc This med takes about 2 months to start working and it has saved our life (my daughter's as well as mine) and added vitamin D was a bonus to get rid of bone pain. Hope this helps. L x
Not sure if you will ever be like before. You will have to adjust your expectations to a certain level of discomfort but you can try your best to make it as good as possible.
Hi. I've been on it for 4 months now. Definitely helped with hot, burning, itching painful scalp. Rashes and tiredness. I still do get joint aches, muscle aches ,swollen hands. not as bad though and unusually after I've done too much. Paying for doing some decorating yesterday, which really frustrates me because I've still not come to terms with my limitations yet. X
I totally get that you’ve not come to terms with your limitations. This something I really struggle with. Most recently I have had to close my cafe I opened 6 months ago... I gave all the vision and get go attitude, but physically I am not meeting the expectation I put in myself.I am slowly learning though...
I am in remission because of Hydroxy I think. Make sure you get the right brand. I get Zentiva company's. I was on Bristol one for 5 years and started having major stomach aches and acid reflux and etc. It turned out the fillers are different, thanks to this forum! Some people react badly. I think some don't like Zentiva either so you have to try and see. But Hydroxy does have side effects. In my case, I think it has caused very heavy sensation from pelvic area down. And possibly a slight brain fog. I didn't have this problem before Hydroxy. And you have to make sure to have your eyes checked every 6 months.But it really down help with swelling and rashes. Good luck to you!
Yes, I forgot to mention. It does help with joint pain. I think the swelling and pain of the joints happen together. You are welcome! Hope you get better with this! x
Hi Stickana My wife started on hydroxy last October as she had been diagnosed with SLE (at last!!) --- the good news -- within a fortnight the rash started to fade away and after about 6 weeks there were signs that her hair had stopped dropping out and was coming back (this was on 200mg/day !!) The joint pain continued though, so the dose was increased to 300mg/day which is the max that wifey could take safely as her weight was 54kg. (NB she had lost 5 stones) We think she is gradually improving but it is so slow that you cannot be sure. We walk every day ie wheelchair part way then she walks with the wheelchair for support distance has increased from 50m 6 months ago to about 700m today, when she is too tired she pops back in the chair and off we go again.Joint pain is still an issue (-- shoulders, hands etc.) and she is getting twitchy leg in bed (not sure what this is??) -- so we are hoping rheumy will add a little methotrexate. Sorry I did not say she also has had RA for 20 years and was successfully on MTX until last flare when she was taken off all meds.
On the whole we think things are getting better, she is gradually getting her appetite back which was a major hurdle for us as she was solely on Complan for about 6 months before last Christmas.
We still hope she will get back to where she was but we are also gradually accepting that this may be a dream and we need to prepare for a different, more restricted, life-style in the future. Hope this helps and keep smiling.
I have been on Hydroxychloroquine for 10 months and suffer with all of your above mentioned symptoms minus the bowel challenges. My Rheumatologist said I should take it to prevent organ damage. She also said that it should suspend my Lupus where it is since diagnosis, which it has. It has not made it better at all. My experience with Rheumatology particularly is very patchy, my original and diagnosis meeting was wonderful; however my follow up was completely different with another Rheumatologist, who spent 5 minutes with me after a 50 minute wait and really couldn't be bothered with me. You're lucky your Lupus isn't bad. Well tbh I have struggled since Christmas barely able to function. I take Hydroxychloroquine because I'm terrified of organ damage and like most people can't be sick because of my commitments. I don't like taking it, but bow to those that understand more about Lupus than I currently know. Apologies, I am struggling today. Namaste 🙏 🧘♀️❤
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