I need help! I'm so confused

I really don't know where to start but here goes.... I was diagnosed with sLe by my GP and rhumey 4 years ago I was put on hydroxy and had regular 3/6 months appointments which I was told was normal.

However this is where I am very confused as I was told the hydroxy will help a lot with the pain and the horrendous aching a feeling like I have been beaten up everyday , which I'm sure they did helped some ,but the aching never ever goes just gets less some days/weeks but then can be some weeks really bad like tearful bad,depressed bad , can't go far bad I think you get the drift, then it calms down to just a low grade ache but never ever goes completely. For me my worsed pain is in my thighs ankles and shoulders.

Now that said I had a rhumey appoint in October and he blew me away by saying my last lot of bloods were very good with a week positive so he now doesn't think I have lupus , he straight away said I should come of the hydroxy and take paracetamol for any annoying aches I get and to take things easy , and he said I will do you another blood test in 6 months before I dismiss you.now any other person would be jumping around the room shouting yippee! But I was devastated i didn't expect that and just sat there with my mouth open in shock and said but what about the extreme tiredness the permanent pain with aches the fact that my bloods have always been positive.

He said I need to go back to my GP and start again.

I came home and sobbed like I have never sobbed before it scared my poor husband who is so supportive .

So I did what I was told I stopped the hydroxy and after just 5 days of stopping my ankles swelled up my body screamed with aching and I had to take my emergency stash of naproxen which gave me instant relief.

Since then I have been back to my GP who took bloods and I must say has been brilliant and together have come up with a plan till my next rhumey appoint in March. The bloods still say week positive but what has convinced my GP its lupus is my dsdna is now reading a very high 83 should be in normal range of 0-20.

All this has left me so emotional I feel like the fight has left me and I can't deal with it anymore I have succumb to fact that for the rest of my life I will never be pain free and now I have stopped the hydroxy I feel I have been hung up and left to dry, I would love my rhuemy to just spend one month in my body and see how it feels to deal with this awful condition mentally and emotionally.

Thankyou for reading 😊

32 Replies

  • Hi Pinky5656,

    I'm sorry to hear that you have been struggling with your symptoms and now also have this additional stress related to your healthcare. I think that it would be a good idea to ask your GP for a referral to a different rheumatologist for a second opinion. Perhaps ask to see a rheumatologist who specialises in treating lupus. If you let me know whereabouts in the country you are then I can give you information about who may be nearest to you?

  • Thankyou Paul

    My husband is desperate for me to see another rheumatologist as he sees me come home after my appointments very emotional.

    I've always seen Dr Patel in chertsey Surrey Ashford/St peters hospital trust.

    My GP said he could refer me to west Middlesex hospital as I live in staines-upon-thames. But I will travel anywhere as I drive.

    I would really appreciate it if you could help me.


  • Unfortunately I don't really know any lupus specialists around your area. I have a feeling the closest would actually be in central london at either Guys Hospital (under Prof. David D'Cruz) or UCLH (under Prof. David Isenberg. That doesn't mean that you won't have anybody who is very good in your area, there just isn't anybody known to me there.

  • Hi, I totally understand how you feel. I went for my usual appt feeling bad. The consultant did not listen to a word I said and lowered my plaquenil by half, told me to take tramadol( although I had told him I take tramadol) no blood tests taken to see if the results altered with this lower dose. My gp was as unhappy as me and referred me elsewhere. I am now back to my usual dose of plaquenil and am told I have lupus, fibromyalgia and connective tissue disease. Please see a different consultant, and state reason for 2nd opinion as not listened to. Hope it goes well for you

  • Thankyou Jayfer I have just made an appointment to see GP tomorrow to ask her to change my rhumey I've just about had enough of not being listen to. It clearly shows in my bloods that something is wrong its just such a shame that appointments and referrals take so long.

  • I have been just diagnosed with lupus last week on a few weak positive homogenous ana,s all other bloods look OK,history and symtoms.If you were diagnosed with sle does it just go away don't believe it does.You should ask this rhuematoligist did he misdiagnose you four years ago?Get a second opinion from another rhuemy.Good that your gp is supportive that's half the battle you should not be left to cope with all this with just paracetetemol and a high dsdna.Feel so sorry for you right now hope you get this sorted soon.xxx

  • Hi pinky,

    I've had lupus for 33 years and in my (apologies) very jaded opinion, when a Doctor behaves as badly your soon to be ex - Rheumatologist did, it often means that they cannot cope with your illness. Instead of being mature enough to say they don't have the appropriate knowledge base and/or ability to deal with a complex illness, they go out of their way to drive you away as a patient.

    Please don't loose hope of feeling better and pain free. A new Rheumatologist with just half a brain can go a long way in regards to working flexibly with you to get the best outcome by testing & tweaking the wide range of drugs available, and figuring out what works best for you.

    Always the possibility of new treatments just around the corner also.


  • Hi. I am so sorry that you have had such a tough time. Think this seems to be the case for quite a few people trying to get diagnosed. Very very hard physically and emotionally.

    I have never had a positive ANA but have lupus.

    Stay strong, second opinion is the way forward.

    I was refered to dr Jayne at Addenbrookes and he has been amazing.

    I take hydrodroxycloriquine along with rituximab. The hydroxi didn't work for me alone although helped a little. The body aches are terrible 😟 Mine used to be dreadful daily along with hot sweats.

    I am feeling so much better on the rituximab.

    Keep us posted on how you get on.

    You will get there in the end.


  • Thankyou Jo this gives me such hope and confidence that I'm making the right decision on changing my rhumey I've put up with the maybe you have lupus then no no no I don't think you do, then next appoint oh yes you do here's steriods you must be in pain 9 months later with no review on how I'm getting on with steriods just you don't have lupus so come off the steriods and hydroxy it has been horrendous all I can say is thankgod for a good GP who helped me ween off sensibly.

    The only problem with GP he's reluctant to make any major decision on treatment without the knowledge of rhuematogist so now I'm on nothing but naproxen if the pain gets too bad.(not good). Feeling down😔

    I also believe that docs don't understand we do have lives to lead jobs,families and Xmas now so close it's so stressful trying to be so upbeat all the time xxx

  • It really is a long hard journey 😟 I spent 3 years so poorly before getting to Addenbrookes, was in hospital 3 times and they still didn't recognise what it was.

    I live in Lincolnshire and have to travel to Cambridge to see dr Jayne but I don't mind atall. There is a great nurse there that I can call with any problems too. You might have to travel a bit to see a good consultant but they won't just fob you off. They are reluctant to give you a definite diagnosis until they are very sure but to dismiss you like that with no follow up is terrible. Took me a year to get a definite diagnosis as I am ana negative.

    I made lists of all of my symptoms and took photos of my skin which was terrible and swollen joints, you can show your new consultant when you get to that point.

    You will get there in the end. Big hugs xx

  • You obviously have lupus with a positive DS DNA like that which the Hydroxychloriquine has been managing. Ask for an urgent referral when you do ask. Sounds like a great gp. Two other things immediately spring to mind especially with the extreme fatigue and thigh pain. Please ask your Gp to test your Vit D. It is very common for us to have very low Vit D and when I discovered I had it I was almost narcoleptic with severe thigh and shin pain. Of course it used to cause rickets in the old days. High dose prescription Vit D made a dramatic difference for me, and this might be something that can be done now and really help you. Secondly the muscle aches could be Fibromyalgia. Your doc may be able to prescribe a lie dose of something like Amytripline (I take 10mgs at night to help as a muscle relaxant, to sleep and therefore with pain). These are two things your Gp can help with now to try and give relief while you wait for new appt. Your DSDNA is high and I think your doc may want to phone a Rheumatologist now to get you put back on Hydroxychloriquine to stop you becoming too ill. Sending love x

  • I was told by many specialists that calcium and vit d are a must when on steroids because they are flushed out of your system faster. and to try not to take steroids for longer than 3 months. they usually just 'hold the boat' until you can get onto long term meds that work for you.

  • Steroids aside, people with Lupus don't seem to be able to maintain normal Vit D levels. When my levels were seriously low (tested by my Rheumatologist ) I had the symptoms you describe). The high dose Vit D we are prescribed is much much high than Adcal which is a maintenance level drug. I was on 10,000 units a week to start. Now a maintenance dose of 800 on my hospital prescription. Please ask your Gp to test you. I don't say this lightly, the improvement in me after a few weeks was life changing. It is one of the first things my Rheumatologist always checks with people. Happy for you to print this and show it to your Gp. My Rheumatologist is Dr Amft, in Edinburgh but a lupus specialist and speaks at conferences etc x

  • Ps. I was on steroids for a year and now hydroxychloriquine and Methotrexate for my lupus.

  • My vitamin d was also really low my dr had me on 10,000 iu a day to get an keep it at normal but as soon as it got normal I seen my rheumatologist for the first time an he said your vitamin d is normal and told me to stop taking it and also said when he tested my Ana was normal an I just had fibromyalgia (my Ana was also in the 80's) so now he is taking me off all the lupus meds because my blood work is now in a normal range! My dr still says lupus but with fibromyalgia and now with IBS and said to hold out an when the rheumatologist gets me off all the meds he will do blood work again an see I do have lupus an till then for the pain see a pain management dr, and she is also trying to get me into see a new rheumatologist. I thank it's crazy the rheumatologist wouldn't hear me out when I told him about my pain in my hips,back,knees, feet, shoulders and the really bad migraines and just said to loose some weight and my knees,hips,feet, and back would feel better then called me a week later and said well you have osteoarthritis in your feet and degenerative disk disease in lower back! And now my massage therapist says I have disks that are slipping in my upper neck (wonder why the rheumatologist didn't see that)?

  • Yes its shocking a rhuemy didn't see any of that so maybe like me you need a second opinion and try another rhuemy my fear is that they are all the same but reading posts in here I think not, we can only try.my vitamin d is fine so I know it's not that

  • Hi Pinky

    Just want to say I'm feeling for you with coping with the aches!. Not easy day to day as I'm finding at the moment!. You are doing the right thing going to another Rheumy, can't believe how you've been treated. You need Hydroxy changing as it's partially worked, he's an idiot not to see that as your bloods are positive for Lupus!. What more does he need?. Hope you won't have to wait long to see new Rheumy, ask your GP to make it an urgent referral. It's great you have a good GP . Good luck and keep us posted. X

  • You poor sole,don't get down get angry ,get your gp to refer you to another rummy ,insist on it,you have rights,take your husband with you to the docs so he can tell the go how awful your life is.chin up Christmas is coming

  • I hear ya. you are a little more experienced than me in the med dept, I just started high dose of prednisone, low dose of Plaquenil, so coming down from prednisone I am feeling some pain and swelling again, but really charged about getting in my 3 months of Plaquenil to see if it works for me. after reading what you wrote, all I can say is that I thought a person could be on Plaquenil for a lifetime (except for eye problems) and that would be fine, and I thought I understood that they can ADD other meds with it. But someone tell your Rh dr that Lupus is forever. remission or not you should have the ultimate say so in the end. I have had lupus for20 years and put myself into remission when I was younger, but recently I have gotten myself many 'teams' of specialists, and a drug regime to go along with them. nothing wrong with getting another Rh doctor opinion. all that time building up your Plaquenil in your body cant just be thrown down the drain. Other Rh drs may run other tests. personally I had about 10 blood test alone for lupus blood markers (all positive) one or two simple tests doesn't clear up all the infor for the dr. also get other tests. kidneys, lungs, thyroid, etc. I have run into some really unhelpful Rh drs in my past and some really amazing ones! so they are as different as pie. choose one you like...Good Luck!!

  • Hi mariearmstrong I have a question my regular dr after talking with her for months though I had ra when she tested my blood came back really low vitamin d and my Ana was in the 80's she put me on all the regular lupus meds and made me an appointment to see a rheumatologist that took 3 months to get in to see him when I went to him and he said don't talk to me I don't know you or what you have I do know your not going to have lupus but fibromyalgia an he did his own blood work an I went back to him a month later an he said my Ana and vitamin d is normal did the point test an I almost hit the floor he said I have fibromyalgia I said ok but could my Ana be normal because I have been on all the meds and that they are working? He said that was stupid that didn't happen I said well what about me having a pelvic,bladder,kidney infections all the time he said I don't know that has nothing to do with lupus or fibromyalgia go see a gynecologist... But when I called my dr back she said he should know I do have lupus yes with fibromyalgia an says to see a pain management dr till the rheumatologist does other blood work and sees I have lupus too! He did call an say I have degenerative disk disease and osteoarthritis in my feet.. And massage therapist says slipped disc in my upper neck that could be causing the migraines! Have you ever heard of any of this? My dr thanks I should see another rheumatologist. I'm at a loss of what to do!

  • well ya, get rid of that dr out of your head. dismiss that appointment ever happened. move forward to the next rheumatologist. you are on prednisone and Plaquenil I assume? of course these meds will change you in 3 months.

    the rheumatologists job is to monitor these drugs to make sure you are taking enough, not too much, document tests and concerns, and provide a list of all the potential drugs that suit you.

    did this rheumatologist not get your doctors letter of referral complete with all your information??? did the doctor not even open your file to look (I ask because I have actually CAUGHT doctors talking to me before reading my file at all!!)

    Time to do the Lupus-two step and move on to the next potential amazing doctor that could be waiting right around the corner. stay on your meds, keep a medical journal. what you right in that journal is what is REAL, even if someone doesn't believe you, its YOUR point of reference. its where everything originates from.

  • Hi yes all of my information with blood tests were faxed to him he was looking at them when he was in the room. And my regular dr put me on prednisone 10 mg a day (the rheumatologist dropped it to 1 mg a day an I told him I was in pain he said yes you are going to be in pain coming off prednisone), carisprodol 350 mg 2x's a day, quetiapine fumarate 25 mg 1x a day (at night for sleep), meloxicam 7.5 mg 2x's a day, hydroxychloroquine 200 mg 2x's a day,levothyroxine 75 mcg 1x a day (for under active thyroid), bupropion sr 150 mg 2x's a day and Xanax 0.5 as needed both for panic a! The rheumatologist said he is slowly taking me off prednisone then he was going to work on each one by one till I was off all of them and said there is nothing he can give me for fibromyalgia pain I just need to loose weight and work out!my regular dr can't believe how I was treated and how the rheumatologist is doing so they are trying to get me in to see another rheumatologist but they are backed up and it could be July before I can get in! I just didn't know if I was the only one this has happened to?! My husband believes the rheumatologist and just gets mad when I bring up lupus and says the rheumatologist said you don't have lupus why do you keep on its like you want to have lupus or something! Is it just me? and yes I had been writing it all down but the rheumatologist said he didn't want or need to see it!

  • Hi teiamarie

    I believe rhuemys don't like gps interfering with there prognosis as I'm back and forth and both have different opinions it's so frustrating.

    So I'm getting a second opinion regardless of how long it takes

    Good luck

  • your rheumatologist didn't suggest other drugs to add or replace the Plaquenil???????

  • Hi Marie

    No my rhuemy doesn't think I do have lupus regardless the fact IVe told him I'm still in pain so I went to my GP who did more bloods and they came back much higher then they did last time, what's really frustrating is that I always thought lupus test can change all the time so I don't understand why he would want to dismiss me.

    So he didn't think I needed any drugs, I can tell you sometimes I just feel like giving up on all docs and consultants they can make you feel such a hypochondriac .

  • I'm in the same boat with you!

  • Pinky, I feel the same as you. I have been told to stop the hydroxy but I still have pain. I had a weak ANA positive. A lot of my pain is in my back, hips and knees and also my skin hurts and nerve pain. They said if my bloods show a low result next time which is considered normal then I too will be signed off. I can only function for about four or five hours a day - how can this be normal? I understand what you are going through. This all kicked off for me after a back operation. Now I have so many problems. They took the metalwork out because they said I was reacting to it. I now realise my body is attacking itself. Sorry for the waffle. I hope you get some help.

  • Hi hippykak

    I'm sorry to hear this is also happening to you too. I'm also in too much pain and discomfort and when I read on here about other people who have there condition under control it upsets me that my rheumy doesn't seem bothered about my complaints which are very real,he is only in what the bloods are reading.

    My bloods have gone from very positive to positive then week positive but my anti dsdna on my last blood work was a very high 83.

    Unfortunately everyone I talk to on here and my family keep telling me to change him but my GP is reluctant to do this so I have to get hard and insist on it to my GP which I find very hard, as I'm not very confrontational .

    Take care xxx

  • I am a big advocate of dental materials and silicone materials causing lupus flare ups and maybe even causing lupus. also everyone should be allergy tested for basic food and household allergies at the very least.

  • Marie, I know the back operation kicked off my problems. I had tests privately which showed allergy to the metalwork but the NHS will not admit this, although they have said the operation could have triggered my immune system. I then became allergic to literally everything. It's been hell, I wouldn't wish it on anyone. Another lady I know was taken back in and they scraped out the bone cement from her spine. Wondering if I'm reacting to this?

  • I know how you feel I'm on the hydroxychloroquine and I believe it helps but still the pain never goes away just some times really bad and other times I can manage but here's where I'm at my dr talked to me and heard me out did blood work and said with out a doubt I have lupus sle put me on all the regular lupus meds an mad me an appointment to see a rheumatologist for 3 months every month I called my regular dr and asked are you sure it's lupus and every time she said with out a doubt ok so then I go to my rheumatologist appointment he don't talk to me don't allow me to talk to him just says don't ask me anything I don't know you and I don't know what you have but I do know I'm going to do my own blood work and I can tell you you're going to have fibromyalgia and not lupus keep in mind I have been on the lupus meds for 3-4 months the rheumatologist did his blood work a month later I went back he did a pressure point test an I almost hit the floor from the pain and he said your blood work is normal you have fibromyalgia and said I need to loose weight that would help with the pain an he is slowly taking me off all my lupus meds. A month after I called me dr to tell her how he acted and he said not lupus just fibromyalgia an she said my blood work should come back normal that means the meds are working I told her I asked him that an he said that didn't happen once it's positive it stays that way the dr said the rheumatologist didn't know what he was doing an told me that when the rheumatologist gets me off my meds he would do blood work again and then he would see that I have fibromyalgia and lupus (now with IBS too) I said what about all the pain from the lupus and fibromyalgia she told me to see a pain management dr till the rheumatologist seen he was wrong! I know this was long I just wanted to explain my story and that I knew where you were coming from!

  • Wow this all sounds so familiar and sadly proberly a very common problem where the GP says one thing but the consultants say another and the patient is stuck in limbo with constant anxiety.

    For me I'm at the stage where my rhumey took me off drugs and wanting to dismiss me but the pain continues and the GP redoing bloods which came back positive so my next appointment to see rhuemy isn't until March which is so far away without any hope of getting an earlier appoint.

    So I've decided a second opinion is needed so I'm back to my GP on Monday to ask for a new referral to a different hospital and a different rhemey dept and hope and prey that they will be easier to talk to and have a much better bedside manner as I really don't like my rhemy at the moment.

    I too suspect that I have fibromyalgia but once again my rhuemy without ever examining me said no it's not that.(grrrrrr) he is so quick to dismiss things but never follows it with anything else either.

    I wish you luck and keep me posted.

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