Gd morning , its been sometime from my last post ,but i thought id wait and see how things would go , ive been of the fragmin injections 2 days now and on warfarin just short of 2 weeks , INR levels slowly getting to where my consultant wants them 3.5-4.5 ...... the past 3 days they have been 3.7, 4.5, and 3.4 .... but ive had a migraine from yesterday morning and still have it this morning , but id like to ask anyone if they have trouble with joint and muscle pain , as i feel so down ,can hardly move in the mornings feel like a 90 year old , the muscle on my upper right arm is killing me , my neck, shoulder, lower back, left leg, fingers , and feet , ive been taking hydroxychloroquine since nov 2016 but if im honest i see no difference in my joint pain , sorry for the long post ... x

17 Replies

  • HI, sorry things are a bit rough, when were your levels of vitamin D, Iron, B12 and Thyroid last checked? I am afraid Thyroid tests in the UK are awful, only the TSH being checked, usually. So I pay for extensive private testing, An under active thyroid not picked up can produce symptoms likes this, also low vitamin D. MaryF

  • The good news is you have a Doctor who has you on the right meds and dose but sometimes it takes awhile. If you still feel unwell then something else is going on as as Mary says it's important to have those other tests done especially thyroid as we often have other autoimmune conditions tagging on. Hang on in there a bit more and get those other tests done and perhaps add some magnesium to your list.

  • Hi,

    The number of INR you mention, are they fingerpricktests or veintests? Do you take a bloodtest every day now? As APsnotFab says you have a good Doctor and that is really something to be happy about.

    As I am Lupus Anticoagulant and I selftest my fingerprick tests are always higher than my veintests at the lab (I selftest at home). That is why I ask. So if they are NOT veintests perhaps your INR is lower than you think. For me it can have to do with an INR of 0.8 - 1.2 depending how high high my INR is that special day. Could that be a reason for your migraine perhaps?

    But I do not understand if you also take Fragminshots or if you have been off them for 2 days as you have started Warfarin for the second week?

    Best wishes from Kerstin in Stockholm

  • I have joint and muscle pain. Have you been checked for Sjögren's syndrome? I have that, but it was misdiagnosed as fibromyalgia. Just a thought.

  • Hi and ty for ur kind replies , i go to the docs everyday for a vein test and they get sent away to the hospital i phone in late afternoon for my results , i,m just so fed up this is my 4th day of a bad migraine and my warfarin is 11mg over the weekend , but havent had much sleep for the muscle and joint pain , i have fibro and rheumatoid arthritis ,ive asked my consultant if i have anything other than APS a few months bk and she says no .

  • Hello, I'm sorry ur having such a hard time. It sounds as though ur being treated with the right things.

    I have Sjogrens, Lupus, Hughes and fibro as well as 4 prolapsed discs and a rare heart condition (Long QT). I have pain in joints and 'deep' muscles every day. I understand exactly what ur saying.

    They were keeping my target inr too Low until I had a migraine for 2 months. It's been awful. Hard to function, to think, to talk ... but after a real fight my inr is now 3-4.5 and we try to keep it over 4. When it drops below 4 the migraine comes back and everything hurts more.

    So keep fighting. In my opinion a high inr is the most important thing u can do for yourself!!!

    Good luck 💋

  • As Tofino says you may have Sjögrens as this autoimmun illness is exstremely common together with Hughes Syndrome.

    Fibro sometimes can hide a Sjögrens syndrome and you can have it even if you have no antibodies as there are seronegative antibodies among us which go up and down in periods.

    These are indeed tricky illnesses and that is why it is so important that your Autoimmun-Expert knows them very well and can distinguish between them also to be able to give you the right treatment.

    How much Warfarin you take is individual but the INR is the same for all of us and important.

    I hope you will feel better soon!

    Best wishes from Kerstin in Stockholm

  • Hiya, yes, fingers and hips and sometimes my back (especially in the morning). Reumatologist did various tests, nothing came up (have you been checked by a reumatologist?). It's also a common symptom of menopause (which I am currently experiencing). Fysiotherapy? (works quite well for me).

  • How much Hydroxy are you on now ??

    I take 400 a day and have been on it since 2011.

    and it has helped me a lot -- i still have problems BUT a lot better than where i was. It takes time , it took me 6 months to get up to full dose and 7 or 8 weeks after that for full effect

  • Hi jet ive been taking 2x200 mg per day since day one and been on them since oct 2016 , and honestly cant feel no difference , so fed-up with myself , been to my local doc and she has given me codeine will receive them today but i,m kind of ruluctant to take these .

  • I have muscle problems tremor's bad spasms. Carpal Tunnel. the tizanidine and the Baclofen , and Gaba are things i take to help and then my pain meds 2 of those and back shots every other month But if i have trouble i can get them in between , that can cause problems so i try to avoid that if at all possible. if you PM me i can give you more on the meds for pain

  • Where do you live Jill ?? i ma in N.H. USA

  • i,m in Scotland hun

  • ty jet x

  • your welcome my new friend

  • Hi Jilly,

    I would like to ask you a couple of questions: Your Doctor had said she wanted you on an INR 3.5 - 4.5 which is high enough. I wonder if she is a Specialist of Hughes Syndrome?

    You also say you have Fibro and RA and Hughes Syndrome and you asked her if you had other illnesses than Hughes and she said no! Who diagnosed you with Fibro and RA?

    Have you ever reached the high level of INR, 3.5 - 4.0? You should perhaps wait till you know if your Hydroxy works before you start another drug. Or if your Warfarin works perhaps.

    You have been to a local Doctor who has suggested Codein. Why do you not ask your Specialist? It is exstremely important that we have a Specialist who understands autoimmun illnesses and are you certain you have got such a Doctor?

    I understand you feel fed up but try to rely on ONE Doctor.


  • Hi Kerstin ty for ur kind reply , i have an amazing APS Specialist infact she has been mentioned in one of prof hughes blogs on here not so long ago , i was merely saying i have been to my local doc as i live 30 miles away from where i wld see my specialist and ive seen her loads since oct 2016 , but my march 2017 appointment was called of , so yes i do consult with her on a regular basis , but inbetween i have my local GP , she has all the info from my specialist and contact is paramount , my INR levels have reached anything between the desired 3.5 to 4.5 and beyond the highest being 4.9 , but i just cant get rid of the headaches as i thought i wld have , also the joint and muscle pain is dragging me down , i hope u can understand this ? i have certainly delved deep into symptoms of APS and there are many many ppl suffer with severe joint and muscle pain... and take hydro, but for me this drug hasnt had any effect , i was just asking u ppl out there if there was anyone else in the same position as myself , as every little blog and info wild be greatly appreciated .

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