Good morning. I haven’t posted for awhile so a little update. Just before Covid made its first appearance, I was feeling the best I’ve felt in along time. I was going to aqua 3 times a week as well as a fun dance class & also a lot of walking. I still had the occasional flare but on the whole I was fit & well. So in my wisdom I decided to come off the Hydroxy the only med I take. 3 months later Lockdown hit no activity at all. Terrible problems with one of my eyes that I couldn’t get to see anyone about back to joint pain flares etc….. Spoke to my consultant he said it could be either the lack of activity or the drug leaving my body. So I should start the drug again even though my eyes were playing up & I still couldn’t get to see anyone. Fast forward to today, got to have my eyes tested at the hospital last October no results were sent to me or my GP who thought I hadn’t turned up for my appointment. I still can’t get in to see my consultant it’s telephone only. My stomach isn’t liking the Hydroxy. I feel sick headaches & itching. On Saturday I had blurred vision & dizziness. It was really bad, it scared me. I’ve been taking just one pill a day but decided to stop altogether. It just so happened that I had an appointment with my consultant yesterday (by phone not my choice) He said it’s highly unlikely that the Hydroxy would be causing my problems & that he couldn’t change my meds because my blood work never shows any inflammation although my scans & X-rays show a different story. He’s offered me painkillers & physio.
My joints are so stiff & painful at the moment & I’m extremely tired all the time. I had Covid at Christmas & had a massive flare which I don’t seem to of picked up from. Spent the night worrying, no meds when my joints & fatigue are getting worse. Frightened of going back on Hydroxy.
If you’ve managed to read to the end of this I’d really appreciate your thoughts.
Thanks.
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Caza
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He’s the top guy so I don’t think it’d be wise to see someone else at the same hospital. I don’t know maybe he’s right & it isn’t the meds then I guess it’s a visit to the GP. Well good luck with getting an appointment with them!! X
Sorry to hear this. But always second opinion is great. Try to see different dr. Hydroxycholroquin doing eye issue. Hope they will change your drug and sort this problem. Good luck. Sending you gentle hug. X
I felt a little bit sick when I started taking Hydroxychloroquine, but after a few weeks it settled down, could you try it again to see if the medication settles down for you. I do feel for you as it's not nice when your not feeling good with medication plus having RA to deal with as well. I think if you did try again and the sickness didn't ease up at least you can advise you consultant you have tried again and it's still making you feel ill.
I went back to taking two pills a day last September but it just didn’t agree with me so reduced it at Christmas to one a day. I got covid on Christmas Eve since then the symptoms have been worse. Last Saturday I felt so bad that I decided to stop the meds. I have to say that I took the meds for 9 yrs with very little problems so it’s all very confusing.
I have heard that some have said that when stopped the medication then started,it again it didn't work as well for them. 😒 I think retrying it from Sept to Dec would have been long enough to settle, but clearly it hasn't. I think you donned to have another word with the consultant or can you ask for a 2nd opinion?
It’s difficult because he’s the top consultant in that hospital. He’s always been polite & listened. He could well be right that the meds aren’t connected to how I’m feeling. Guessing only time will tell. My gut feeling is that he’s wrong.
I am so sorry to hear this Caza and wished that you could have been seen by this consultant as it is all to easy to dish out pills on the phone without getting to the root of why you are feeling the way you are. I just wanted to send you some supportive wishes your way and hope that you can get this sorted as soon as possible. Take care xx
Thank you. The call was over so quickly I wish he could’ve seen how bad my hands have become. Although they’re at the worst first thing so probably wouldn’t of made a difference if he had seen them. Has left me in sort of limbo. What’s making me ill if not the meds & if it is then he won’t offer me any alternatives apart from painkillers steroids & physio. x
Hi Cana, I am also on Hydroxychloroquine and during Covid I could not get my eyes checked at the hospital so I went to my optician (one of the main high street chains) who offered an eye health check. I had to pay for this but it did not cost too much and I am now happy that so far my eyes have not been affected by Hydroxy. They also explained why my eyes get so dry and my sight blurry at times and I am now able to treat this. This might not help your RA but it might relieve your mind a bit regarding your sight and Hydroxy.
Thanks for replying. Yes I went to Specsavers two yrs ago when I was worried. They were great actually not as thorough as the hospital though. I have eye drops for dry eyes. I’ve been taking Hydroxy for nine yrs now with very little problems. I guess I’m wondering if any of the folk on here have suddenly become ill on a med that they’ve previously been ok on or am I barking up the wrong tree & shooting myself in the foot by coming off the meds.
Have you had a full eye examination to rule out possible uveitis, which is common alongside inflammatory arthritis. Dry eye is also common with meds and drops generally help relieve that, but I would get an optician to assess the cause first. Specsavers are excellent and will refer you on to the eye hospital if they find an issue. You are entitled to insist on a face to face, if you feel an examination of your joints is required. I’ve been fortunate and had several F2F throughout the pandemic, usually alternated with phone appointments. It’s certainly not a good idea to stop meds because you feel well, as it’s generally the meds keeping things under control. Perhaps phone the rheumatology nurse to discuss with her, and she could perhaps speak with rheumy on your behalf
Thanks for replying. I know I was stupid for stopping them. I think I wasn’t expecting the consultant to say that it isn’t the meds that are causing my problems & that there’s nothing else that he can offer me. It took the wind out of my sails really & I didn’t have enough time to rally & ask more questions. I have never been given a number for a nurse.
He did say at the end of the call that I was to phone his secretary if my joints became worse or if I wanted steroids 🤷♀️
I think a call back and saying 'thinking on the consultants call I am not feeling that there was enough discussion and I feel we do need to look at other medications as they are out there. Plus go and get a eye check as I was convinced I was losing my sight but Sojerns was causing so many issues plus some of the meds too.Also call NRAS and discuss it out with someone who will listen and maybe some ways to move forward too.
I did write to him a few weeks ago. I told him I thought the Hydroxy was making me feel ill & also wasn’t working as well as they had before & was there something else I could try. I told him my joints were worse,as in more painful & I was constantly tired. I never got a reply. I asked him when we had the phone consultation if he’d received my letter. He had but could offer no alternatives & that the hydroxy would not be making me ill His offer was painkillers physio & if needed steroid injection. He’s gone back on what he’d originally said by now saying that because my blood showed no inflammatory markers then he cannot treat me with anything else. I did get a text from the hospital straight after the phone call to say that an appointment had been made for me. Not sure what that’s for 🤷♀️
Phone his secretary to say you are dis-satisfied and felt you were not listened to and need another appointment/talk with him to discuss options?
As soon as hospital's get a whiff of an idea that you might complain, they usually try to accommodate. I did this after feeling fobbed off by an extremely arrogant ear, nose and throat consultant who interrupted me throughout a 3 minute consultation. I phoned his secretary plus got their email address to put my concerns in writing.
The fact that this 'top consultant' would not have advised you stopping your meds is one aspect of your situation but it does not then follow that this gives him carte blanch not to listen to you and explore all options.
He just said that because my bloods have never shown any inflammation that he wouldn’t be prepared to give me anything else even though the scans & X-rays show a different story. He said Hydroxy was the mildest of the meds & the only one he would be prepared to prescribe for me.
He may review his answer if he knows you're unhappy. I take it you felt steam-rollered by him at the time...been there and didn't voice objections at the time.
Could be worth making your point and asking to discuss with him again even though he said what he said?
I don’t know if I felt steamrollered . Just I guess dismissed in my thoughts on what I thought was happening. I was just expecting him to try me on something else so was taken back really. I have since got a text to say expect an appointment from the hospital. I’ve no idea why or what. Physio maybe or has he had 2nd thoughts. Will wait and see.
Of course well I'm not meaning to be blunt but your options are 1. Do nothing until the appointment or
2. Get the ball rolling and have a complaint noted.
Up to you, of course, and that is good you got a message through about an appointment although as you say it is not entirely clear who/which department you will see. All the best 🙂 🌼
That is such rubbish. My bloods are always normal however my scans show the inflamed joints. I'm on methotrexate and they will defo change it if it doesn't work. Not all arthritis presents the same. I have Psa and never get much swelling either. I find that an ignorant thing for that consultant to say.
I don’t understand why because that isn’t what he’s said before. 🤷♀️ He wasn’t abrupt or rude just said he couldn’t offer me anything else as the bloods didn’t show up any inflammation. I had my last blood test over 3 yrs ago but guessing it’s the same.
Yes I could do & should do. Do you think I should wait for his letter to come out. He writes to my GP after every appointment & copies me in. I just can’t believe that he said what he did.
It’s awful when you have a bad appointment isn’t it. I don’t think he was fobbing me off just the Hydroxy can’t suddenly be making me ill. But I’m not convinced
I'm so sorry to hear of how things have gone for you. We think when a regular contributor is absent for a while that all is well, not always the case as we know from your situation. It's obviously been really disruptive & I'm sure of very real concern. On top of that your Rheumy's not exactly helpful response. It's little wonder you were knocked sideways when what you needed & expected was urgent & positive help, meantime you've have chance to consider. I'd write down all your concerns & questions now you have had time to think & call his Secretary, you need another tel appointment (or better still clinic ) to discuss alternative approaches, & soon.
A simple question & may not be relevant at all, or you'll be aware of & checked, but when you restarted the HCQ your pharmacy didn’t supply you with a different generic brand did they? I ask with you doing so well prior to you stopping the HCQ & with no side effects. HCQ is one DMARD whereby something as simple as a change in brand can cause disruptive side effects/symptoms not previously experienced on another. It occurred to me with you saying your stomach isn’t liking the HCQ & you feel sick with headaches & itching, all typical symptoms of a change in brand. Of course Covid may be at least part to have some relevance, a change in your immune system, but thought I'd ask on the off chance it's not something you'd thought of.
Thanks for replying. I did have a lot of problems with one brand now I come to think of it, yrs ago but the pharmacy gets in the only brand that I can tolerate. So it hasn’t changed unless the ingredients have changed 🤷♀️ The symptoms I’m having now are the same as before minus the blurred vision which has now gone. The sickness headaches & itchiness remain. He dismissed Covid as unconnected. I can’t think of any other reason why it would suddenly start giving me all these nasty side effects. I was taking the Hydroxy at night with my dinner but was waking in the night with sickness headaches etc… so I started taking it in the morning within a cple of hrs I started feeling ill. Just feel it has to be connected. But maybe I’m wrong.
Unlikely then, but just thought it worth mentioning. The symptoms sound awful, & you saying you tried taking it at bedtime, nothing worse than waking & being ill, sleep disturbance is bad enough but for a tablet to cause horrible problems, no. It is really odd.
It is odd isn’t it. He could be right in saying it isn’t linked. But not to offer anything else is strange. I just can’t even think about restarting it whilst feeling like I do right now & Saturday was scary.
If you really think your rheumy is wrong….why not try calling 111 ?As you have had Covid……You might hit lucky & get put through to a clinician who can help you….even if it’s just to confirm your rheumy’s opinion.
Did your eye problem show up anywhere near your Covid vaccinations?I had eye problems after AZ…& my rheumy sent r straight to see an ophthalmologist…& he is keeping an eye on it every three months.
If you are worried don’t give up …..be polite but persistent …….
Oh that’s horrid for you.Have you spoken to your pharmacist…they do just look at the drug reaction without looking at your individual health situation.
Sorry about the underlining…nothing to do with me! 🤷♀️🤷♀️
I meant speak to the pharmacist who usually has has a more overall view of any side effects of drugs than a GP.After all the pharmacist fills hundreds of scrips ..many more than one GP writes….& for all different conditions….so will likely have more info on the drugs you are taking.
The eye problems that hydroxy causes are a very specific type of retinopathy, so your opticians should be able to tell the difference. But if you have been taking it for over 5 years and at a dose over 5mg per kg of bodyweight then you are justified in asked for another drug as risk increase after this.
Have you asked your rheumy about sulphasalazine? Also fairly mild
I get my eyes checked regularly at my opticians but she doesn’t have the up to date equipment. I was having yearly checks at the hospital until the Covid outbreak. I then went to specsavers & then of course for the hospital eye test last October. So I’m guessing my eyes are ok. I don’t understand why the dizziness sickness headaches & the blurred vision all be it that only lasted a short while, whereas I’m still feeling so sick. . I was on the full dose I’ve never been weighed but when I checked myself it was more than I should of been taking. I was really expecting him to offer me that drug. Just was so taken back when he said he couldn’t offer me anything else because of the bloods. If I had the conversation again I would of had a list of questions for him.
Just a thought to put into the mix, Casa: Your body had quite a shock when you suddenly stopped your med after years. It had been chuntering along quite constructively before that. You could possibly have upset theapplecart & it will take time to readjust. That is good advice about Specsavers. They have the latest systems & will find anything which needs investigation. You mention going to see your GP after a long break. I always think that it really helps to have a good relationship there if possible. The GP an be a first-line ally. Best wishes.
Hi Caza. I know how worrying this condition is. I’ve had RA over half my life (29 yrs) & iritis & glaucoma. I wasn’t feeling well. Missed a few infusions. had the 2nd worst flare of my life, just before covid came on the scene. I could hardly walk. Had to use sticks too. Was on alot of steroids & naproxen. I had to take a cab to my infusion. The cabbies had to help me in to the car. The pain was horrendous. Inflammation was 98!! But i was bloody lucky. They gave me double the infusion & more steroids. But what really made me angry was. I rang 999 to take me to a&e. They wouldn’t send me an ambulance. I had an argument with the rude operator. They said if it’s that bad. Ring 101. They actually did the right thing & sent one. My lift was buggered. (On the 4th floor). The guys they sent weren’t paramedics. They didn’t even bring me a stick! I had an absolutley awful time. Back to you! (Sorry i do ramble).
Maybe you should try & get a new Consultant. I know how frustrating it is when no one’s listening to you. It’s important to have some sort of bond with the medical staff. As we do see them regularly. You must show your clinic how upset you are. Your life sounded great before bloody covid started. I’m sure you’ll get back to that level of fitness. This disease is exhausting. Good luck with everything. X
Hey CAZA. I’m glad we all agree. I nearly changed my Consultant. This was when i had the awful flare up. He’d never seen me so bad. But he showed no empathy. I was very emotional. Went home. When i had my infusion, I told one of my infsion nurses. I’ve been having Infliximab for about 17yrs. The nurse knew me the longest. I told her i’ve never really bonded with the Consultant& that i was thinking of changing him. I’m not sure if it’s my imagination. But i feel he’s a bit more sympathetic. He rang me the other day for a phone app. Gave me a full 20mins. I felt i could really talk. Made a difference.I was also offered free counselling. Some days i feel better than others. Maybe you could look into counselling. This disease can make you feel very emotional & vulnerable. So talking about it can help. I also have a sort of diary. It helps me. Plus i love to sing. Good luck again. X
Hi Caza. Just a couple of thoughts - apologies if others have already covered this.
You said that you never heard back about the eye test at hospital. Have you tried chasing the results? Letters do sometimes go astray. Eyes are so important, I think you are perfectly justified in checking up on this
Secondly, I do think you need to try to see someone else. I have PsA and inflammation NEVER shows in my bloods....
The eye clinic at the hospital have been a nightmare. I’ve written & phoned left messages etc ….but nothing. My own GP wrote to me & asked why I hadn’t turned up for the eye test because they hadn’t heard. My consultant told me on Monday that no toxicity was found,so l’m guessing he’d got the results at least.
When I first saw my consultant 10yrs ago now , he told me he would treat my symptoms & go by the the scans & Xrays. He said my bloods were borderline. I don’t know what’s changed. I haven’t had a blood test for 3yrs.
He’s made me question whither I’ve got inflammatory arthritis at all & if maybe it’s all in my head.
Gosh! I really don't know what to suggest, but I think I would be looking for a second opinion. I was about to try a private consultation because I felt there were inconsistencies in what mine was saying and I wanted to be able to discuss things more fully. But by the time the letter about my last appointment arrived (2 months after the consultation), my joints had suddenly stopped hurting or swelling and I have loads more energy. Think my mtx is finally FULLY working. So I'll save the private consultant for if I need it in the future.
That’s good that doing well. I felt like that on Hydroxy for many years. It’s great when the meds work. Atm I just want to stop feeling so sick & headachy thank goodness the dizziness has stopped.
Strange the consultant says both that he will not offer anything else then says ring the secretary if you want steroids. Steroids are the best and the worst as we all know, so to my mind those things do not compute. Second opinion needed.
I have had to stop two medications now one being sulphasalazine which I had taken at the time for approximately 5 years without any problems, the fear was that I would have a full blown allergic reaction (nothing ever put on my notes), fast forward 2 years and another long term medication started to cause problems. Many of us can sense when things are starting to go wrong, our GPs should be our first point of call although trying to actually see one is like finding gold dust. Sometimes stamping our feet (figuratively) and requesting a second opinion can work wonders and you find someone who listens to you and something gets done and your mind put at rest.
Thank you, yes I’m guessing that’s the route I’m going to have to take. I don’t really understand why he was so adamant that it couldn’t be the Hydroxy making me ill 🤷♀️
In your area is there an optician that does minor eye clinic?Here I have one who sees me on the NHS if I get an eye problem.She then refers me to the local hospital eye dept.
I have rheumatoid and have had to increase / change my meds because of my eyes
Hi there, maybe go to a good optician for eye tests and they can do photos at the back of the eye. I do this once a year 6 months after the annual screening that is required for hydroxychloroquine so technically have a screen every six months. Blood pressure issues may be a cause of the dizziness. I have suffered with random giddiness since R A started. Also has your doctor done heart issue screening as in cholesterol tests etc to make sure your blood flow is as it should be and to make sure you’re not at risk for clots etc. hope you get some help.
Hi there, this should fall up in your gps remit, not sure of your age but in my opinion it should be checked. Ra makes you more at risk, I had a mini tia when I was 35 ish and have statins and annual bloods to check it’s all as it should be,
I asked my rheummy to refer me to an eye consultant at the same hospital. I said I was worried about my sight. Ophthalmologist said I had euvitis and RAmeds were not working. So rheummy changed my meds! Different ways to end results😊
Oh dear all distressing for you.I've no idea wat's causing waht with with you, all I can say was on hydroxchloroquine when first being treated, then taken off it by consultant.
All was fine without it.
All my recent flares are from inconsistent taking MTX ( surgery, vaccines & infections) needing me to have steroid intramuscular injections.
I’ve only ever taken Hydroxy & not being offered anything else now or in the future or so it seems is worrying. He has offered me steroid injections but I can’t keep having them indefinitely. Sounds like I need to wish you well also.
Hi Caza, I'm sorry that you are in this situation. I would advise you to call the NRAS help line on 0800 298 7650. They are probably better placed to help you than any of us, however much we want to help. I hope you find a solution soon. It's not a good day place you're in. Keep us posted.
I'm wondering why you did so well on hydroxy and now it's causing all those problems.Firstly, I think that giving up all your exercise has caused a lot of your problems. Also stopping your meds.
Covid can leave you with all sorts of after effects like itchy skin, rashes, hair loss etc.
If I were you I would persevere with the meds and ask for a steroid injection for your pain. Also, if possible get back to exercising, even if it's only a daily walk.
Exercise does wonders not only for body but for the mind as well.
I can't comment about your eyes as I don't know but I had double vision, dizziness and very itchy eyes when I started methotrexate.
I’m back doing aqua once a week & walking daily but the joints & fatigue would sooner I didn’t !I don’t know why they’re suddenly upsetting me or if it’s that. I guess time will tell.
My bloods are always normal so I don’t understand why your only choice is hydroxy. Hopefully you can see your GP and get a thorough check up and have your bloods checked. 3 years is a long time. What did your scans and X-rays show? It seems very weird that you would be offered only the mildest of medications if your scans show joint damage. Have you been diagnosed with inflammatory arthritis? I agree with the other suggestions and think if your joints are sore and you feel like you are in a flare you need to call back and tell the secretary you need help. I don’t know if you should start back on the hydroxy. I feel so sad about this thread. It is so frustrating to hear you were so well for so long and now you need help and can’t get it!🥺
My doctor felt my joints and she said she felt bogginess so she diagnosed me with inflammatory arthritis. Does your rheumatologist feel for this bogginess? She put me on methotrexate which was toxic for me so I only lasted three weeks. I have been on leflunimide for just over a year and recently she added sulfasalizine. I find this whole situation awful because I have fibromyalgia too and I don't even know if the medicine is working because I can't tell the difference between the too. I am glad that you at least heard from the consultant. Are they sure you even have inflammatory arthritis? It seems very neglectful to withhold options if they feel you do.
I’m sorry you’ve got to contend with two conditions. Yes at the beginning he did. He said everything pointed towards RD bar the bloods. I had never even heard of the condition. All I knew was that I was in pain was extremely tired & could hardly walk. The steroid injections & Hydroxy were a life changer for me. & now he’s saying I do not have inflammatory arthritis & if ????? I’m having trouble with Hydroxy then he cannot offer me anything else. He actually did put ???? In the letter. So if I don’t have it why has he treated me with meds for 9 yrs.
I guess I shouldn’t even be on this forum. Im so confused. I suppose I should be pleased but it doesn’t take my painful joints away. Or bring back all the lovely shoes I had before the non inflammatory arthritis got to me!!
Well the first rhuemotologist I saw said I just had fibromyalgia so they can be wrong. It seems strange that the steroid made a huge difference if it is not inflammatory arthritis. Wow! Definitely, push for another opinion if you can. I think your doctor sounds terrible. Why did he put you on hydroxy in the first place! Nine years of taking an unnecessary medication. Did they even feel for bogginess? It can’t be fibromyalgia as that does not go away with a steroid injection. Jeez. I don’t know what to think!
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