Is my gp Trying to confuse me??

HI. It's the 2nd time iv been to my gp and I chose a different one so I Might get the treatment I need. My rheumatolgist told me I couldn't be put on my immunity suppressants until the aids/hiv tests had come back negative, for obvious reasons. So She started me on hydroxycloroquine, adalat, tramadol (now morphine) and ibruprofen. She said once my results came back I'd get the immunity suppressants and any more things I may need. WEll all came back clear except they found another antibody that makes my blood clot so I needed low dose asprin and stomach protectors, plus my I.s. twice now iv asked for them and they just say I'm already on them! No matter How many times I say She put me on hydroxycloroquine for the arthritis and I had to wait for my bloods to get the I.s! I know they are anti malarials but they are saying there both??? It's confusing me now so what's the truth? Why test me if i am on them already, could of killed me in the 3 month iv waited to get the results.

12 Replies

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  • hydroxychloroquine is one of the less heavy duty immunosuppressants Loubielou.

  • I'm confused, Why would my rheumatolgist say She can't give me immunity suppressants until the blood test came back and then give me them anyway? NOt that they work at all but Still I wouldn't want to come off them and end up worse lol

  • Hi, it sounds to me as if they have found Hughes Syndrome, many of us on here, are on this great forum and also on the Hughes Syndrome one, such as myself. Plaquenil... the hydroxyclor... is the right drug.. this takes time to work, months in fact, it has a slight calming effect on clotting, and also deals very successfully with fatigue with the majority of patients. Low dose aspirin with stomach protection is also the right thing, and always take on a full stomach. If you do have Hughes Syndrome (sticky blood, APS) etc, you will need close monitoring. It is an unstable condition. It sounds as if your rheumatologist is being very through and a good detective. Do you have migraine, I am guessing that some of your pain relief is for that. Also often with Hughes people can develop Sjogrens and also thyroid problems. I am please do hear that you are having such thorough care for your Lupus, and this particular site contains good advice. Mary F x

  • Ps, I meant to say I have lupus as well as Hughes!

  • Did you or are you struggling to carry to term? Intrusive question but I wondered if you've had problems like me? The horrific labour put me off having more than the one I have but future may be different.. Xx

  • I've had 2 children since being diagnosed with APS & lupus & apart from having 2 switch from warfarin 2 clexane (blood thinners) during both pregnancies & having them both prem (1 4 weeks early, 1 6 weeks early) my pregnancies & births went well, despite everything I'd been told ;0)

  • No, but only because I was a patient close to St Thomas; Hospital in London who have the expertise with this disease and the overlinked pattern of Lupus and Hughes together. I was supicious as my sister had had 7 miscarriages, she has hughes also and had dvt's in her legs and PE's in her lungs, my other sister both those symptoms.. so once I got suspicious with my first... they found I had blood clots in my legs I was put on fragmin for my pregnancy and every other pregnancy after that: So all ok, if you have the correct management of the condition the success rates and pregancies are easier.

    It is bad luck to have the two diseases together but your rheumatologist looks like they go into detail, which is good, as some do not.

    telegraph.co.uk/health/4400...

    Mary F x

  • I have a whole range of health issues lol, lupus, the one you mentioned, joint hypermobility, raynauds, rheumatoid arthritis. I have severe headaches every day, can't escape them, the fatigue is the Same as it was 3 months ago, chest infections twice a month. Whole thing is a nightmare tbh, they told me all this is the reason Iv struggled to carry a baby to term tho so I'm Glad its been found out Finaly, iv got one miracle that's enough for me. I bled really badly in labour and nearly died so I wasn't planning more anyway. MY rheumatolgist is amazing its the doctors at my gp office that are a joke, none of them care or understand and It's frustraiting to say the least. XX

  • As Maggie has said, Hydroxy is a low immunosuppressant so I would think they wanna c how u react on that rather than sticking u on something more heavy duty. They probably prescribed that 2 combat the other issues in the first instance & will c how u cope with that b4 sticking anything else in2 u're body. Hydroxy can take an absolute age 2 kick in so try 2 bear with it 4 the time being & c how u go as I know it's easy 2 say, but u don't want 2 b taking the max strength stuff yet as u're body will only get used 2 it, in which case, they won't b as effective.

  • The my wasn't meant to be in capitals my phone is random and I don't always check, not being overly shouty lol not in my nature, so if ever somethin seems like I'm being mean through capitals or over emphasis then its not on purpose I Promise :) brain fog convinces me iv checked for grammatical error lol Xx

  • Thanks guys :) My doctor has no empathy so I Never believe a word, he treats me like a hypo. Can't wait to see my rheumatolgist :) Xx

  • Thanks for all the advice guys. KNowledge is definitely power especially with health :) xxx

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