LUPUS UK
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confused

sorry to go on but I am worried and confused. I was on hydroxy for 9 weeks without any benefit. things were getting worse, not better. spoke to rheumy nurse on Tuesday and she didn't really get some of the symptoms I was talking about. in April I was diagnosed with possible lupus. I told her that I struggled using my limbs due to awful aching and heaviness when using them. lifting with my arms, walking up slight inclines which make my legs feel like lead weights and like jelly. I have been told to make an appointment with my g.p. again and discuss my symptoms again. everything I do is so tiring, even combing my hair, showering etc. I feel I have got a brick wall and getting pretty low about it all.

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I also have a lot of pain and discomfort in my neck, back and in my shoulder blades area along with the fatigue.

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Hi there, sorry you are feeling so rubbish. I know what you are going through. I was put on hydroxy. I will say that it did take a good few months for it to kick in. Of course you should see a Doctor if you are not happy. I am sure they will be able to offer you more meds but don't give up the hydroxy, give it a little while longer, with time it should make you feel much better :-)

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my rheumy nurse told me to come off it and ring her Monday and get into see my g.p. again as the symptoms getting worse don't add up. I think I could have more than one problem to be honest. x

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OK, I suppose they know what they are doing. Hope you get the answers you need from your G.P. Keep in touch and let us know how you are getting on :-)

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constantly worrying and searching on the internet isn't helping but I can't help it. I just want to know. surely I shouldn't be feeling less strength and energy after being on hydroxy for 9 weeks. I think the nurse suspects something else after asking me my age and muttering to the other nurse, too young. really am getting myself in a pickle. I am not a doctor and the nurse was asking me what I thought about stuff. you can't really discuss things over the phone. you need to be seen and my appointment isn't until next February. see what g.p. says when I try and explain my symptoms. I have kept a diary from when I started the hydroxy which I hope will help plus my mum is coming with me as I am so forgetful. lol.

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It can take up to a year for Hydroxychloroquine to work, so that you have to just wait out. I'm on month 10 and am just now feeling it's effects. Every lecture I attend and doctor I see say the same thing: 9-12 months to determine effectiveness.

Based on some of what you described in your first post, I would talk to you Rheumy and get myocitis ruled out. Some of the things you describe are really specific those syndromes. Also autoimmune, but goes after the muscles and causes the exact types of weakness you described. That being said, I have a friend here whose Lupus is nothing like mine and she only gets extreme weakness, fatigue and the "fog". She does have some of the blood markers, but her organs are ok, no joint pain and never had the rash.

As I learned more, often the best place to start with your docs is ruling things out before moving forward with a Lupus diagnosis. You may be missing out on the right treatment if you haven't had other issues ruled out.

Hope this helps and, even though I know waiting and not understanding can drive a person batty, you have to be patient. Autoimmune treatments are a marathon. Sans steriods, no quick fixes. And by quick, we usually mean < 6 months.

Chin up, you'll get it sorted out. Good job tracking what's going on!

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thankyou. I have only seen rheumatologist once. second time which I saw a rheumy nurse. I am getting myself in such a state. I believe it is more than lupus if it's lupus at all as I have no skin rashes or anything like that. pain and aching all over. fatigue. everyday life with even showering tired me out. xx

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The diary is a good idea. I don't know the reasons why the rheumy nurse told you to stop taking hydroxy. It can take up to about 6 months to work, and unless you had a clear allergic reaction ( which would be a medical emergency) I'm not sure why this advice was given.

I counted the days to the six months expecting a miracle. In a grump I stopped taking it at the end of last year. A very big mistake. It really was helping, and I'm definitely not stopping it again.

I hope the GP can help. Chin up! We're here for you x

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she was concerned that the hydroxy has made me worse. fatigue awful and pain getting worse hence telling me to stop and ring back Monday and see g.p. again. I know she suspects something else but don't know what, else, why would she tell me to go back to g.p. xx

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This sounds like a serious matter you should get in soon. I swear up and down (as does most of the medical field) that hydroxy is the safest Lupus med and for the most part anyone with Lupus is advised to take it. It might be effecting you really differently, but from everything I've been told it doesn't really cause harm in anybody, Lupus or otherwise. So, maybe something else is triggering the symptoms or flare?

Can you think of anything else that could be making you feel worse? You sound really stressed out. That can make you feel horrible if you have Lupus. Even stressing out about the medication could be triggering a flare. I've definitely been through that. I've been on 7 drug trials for it in 2 years. The stress of waiting for things to work I had to learn to control. It was eating me up inside.

Don't know if you have already done this, but add life events to your symptoms tracker. as well as your state of mind and how much sun and rest you get.

Curious - did they ever start you on a course of steriods?

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yes steroids was the first thing after my first appointment.

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wasn't put on hydroxy straight away.

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I have only seen the rheumatologist once. 2nd time was just a nurse. I was diagnosed with suspected autoimmune disease but didn't have a confirmation set in stone it was lupus. I was just put on hydroxy after first having a course of steroids. these were amazing but after 4 weeks, symptoms soon came back with a vengeance. 2nd visit saw the nurse as symptoms were back, gave me steroid injection which was useless. I was then put on another course of steroids and to no avail, they did not do like they did the first time. first time I felt on top of the world. I then started hydroxy and have not noticed any improvementwhatsoever, I have got worse. I have been told to stop hydroxy and to go back to g.p. x

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Hi I was told hydroxy could take up to 6 month to start working but I ended up on hydroxy and methatrexate now that made a massive difference but I got some very bad infections sepcis ect been taken off methatrexate for 12 month to let latest infection to settle down and boy do I know I’m off it

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I was told at most would be 3 months and after 9 weeks on them, I was getting worse. surely you shouldn't feel worse than ever. I don't think I am on the right meds as I think something else is going on. I have no real joint problems, only when it's cold. have no rashes or anything like that just weak in all my limbs and a lot of pain and discomfort in my neck shoulders and back along with fatigue and heavy lead weight feeling in my arms and legs when trying to use them. struggle to comb my hair and getting showered. every little thing is so tiring. x

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Wow. I'm not sure where that doc was getting his/her info, but at most 3 months .... that's not true. I think you need to see someone else and definitely get that full work up across all the autoimmune diseases. Something tells me that upper body stuff your experience is related to something else going on.

Keep pushing to get answers!

BTW - just wanted to share that when they first put me on Methotrexate, which is pretty standard, I went downhill sooooooooo fast. The docs were super confused. Ended up that my liver hated it, but even after stopping it's left me with lasting joint pain in my knees that I didn't have before. So, it is possible to have a medicine that supposed to help be the wrong one for your body. I would just make sure they are getting to the bottom of it and keeping an eye on your blood work.

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my e.s.r rate was very high. I think I am on wrong meds. I have been going downhill more on hydroxy. I am off it and have to phone rheumy nurse again on Monday. going too see g.p. 16th December who is the g.p. who first referred me to a rheumatologist. my arms and legs just feel so like lead weights when I use them. I am also struggling this last couple of weeks keeping warm. nightmare. x

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Hi Mandy, sorry to hear you are still not good, I'm still on hydroxy, my rheumy doc took my hand and told me it can take months to help, I had cut it down to 1 tab as I was constantly being sick. She has organised for other tests on my stomach as she didn't think the hydrox was causing this, told me to try and get back to two tabs again and is seeing me in December again. I'm continuing to lose weight and now my legs feel like jelly and I've started getting tingling in one leg at night, I have to get up and walk about. Ive had this feeling before, my legs used to give way and down I'd go. I hope it doesn't do that again, but I'm aware it could happen. I'm also exhausted after washing my hair and having a shower, this flare has lasted a bit longer than usual, I've been covered in spots which I've taken a pic to show rheumy this time and now I've got a sore throat, I just know how you feel, when is this goin to end. Take care xx

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I had a mysterious sore throat which came to nothing. it lasted 5 days and I had a job to swallow and felt like there was a big lump in my throat.

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Have they checked your vitamin D levels Mandy?

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no they haven't. in my letter it isn't a specific diagnosis either. it actually reads suspected autoimmune disease. x

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