Muscular pain in arms/shoulders - lupus flare or low INR?

Does anyone else suffer with bad muscular (rather than joints) pain and heaviness In their arms and shoulders?? I've been on warfarin for aps for 6 years and developed lupus during my pregnancy a year ago. Severe lupus flare post partum but been ok since after getting meds right. Last few weeks have had these bad pains/discomfort and it's Coinciding with a low INR for me which my clinic can't seem to get up despite big increase in warfarin..starting to worry its a dvt in arms/s as it's not dissimilar to the pain I had in leg with dvts. Can Anyone relate??thanks

13 Replies

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  • In 2008 I had trouble regulating my INR while on warfarin. My hematologist switched me to Lovenox. I have been on Lovenox ever since.

  • I have o personal experienve of DVTs causing arm pain. But a thought-- which may be a good, or bad one, ( check with your doc) -- a nice bask in a hot tub might help dialate vessels and dissolve clots as well as relax strained muscles. Or, a hot tub soak may increase local inflammation,( which is why it might be a bad idea.).

    Good luck.

  • Hi, it is clear that you need close monitoring until you get to the bottom of things, the clinic appears on to this, are you due to see them next week? Obviously if things get worse you must go to hospital, but in the meantime presumably the INR issue wlll be ongoing, until there is more resolution. MaryF

  • Having Lupus after a diagnose of APS is not very common. I hope your Consultant knows about APS and that you also have an APS-Specialist.

    I must admit that I do not know the difference between Lupus (which I have not yet been diagnosed with) flares and APS-symptoms! I know APS-symptoms though.

    Some doctors that do not know about APS put us on too low INR. We feel best at an INR around 3.5 or even higher.

    Go cheque your INR as soon as possible and talk to your APS-doctor about eventually change to another anticoagulation drug if you are having big trouble to get your INR in the right level and also stable. You shall not stay at a too low INR!!

    Please let us all hear how it goes for you. Good Luck from

    Kerstin in Stockholm

  • Thank you for the responses guys :-) funnily enough the only thing that helps Is a hot shower which I agree I presume gets the blood flowing. But it's transient relief. I have an excellent APS and Lupus specialist team in London thank goodness, where Professor Hughes himself started the clinic. I'm not due to see them until the 17th March though although if it gets worse I shall go to their a &e as my local hospital and gp don't have a clue :-( they told me I had a torn calf muscle with my first dvt and then just muscle pain when I had pneumonia :-(

    Yes Kerstin I am best when my inr is around 4 , I clotted before at 1.8 and it's now 2.2 :-(

    I'm very vigilant, I have my one year old miracle son to look after so I shall keep a close eye on myself..x

  • So good to hear that you have a strong APS-team at your side.

    Yes, I thought of your one year old son and can understand that you are vigilant with your health.

    Give your miracle a hug from me and good luck on March 17th!

    Kerstin

  • I have bad muscle pain in arms and back and also legs-i get back and shoulder shots every 3 to 4 weeks - also on pain killers - i don't have lupus but the osteoarthritis is a problem and common with APS patients that i have seen over the years on this site and others -I am on warfarin i use Lovenox at times but can't stay on it as it is not safe with me. I do take hydroxy which helps a lot.

  • I get horrible pains in my shoulders and lower back, they get gradually worse to the point where they are unbearable. However if I massage them or lie in just the right position they just switch off. I wasn't bad enough to be on warfarin so just aspirin and steroids for me.

  • Have you guys who get the pains been given any answers? Is it just immflamation? It's confusing that so many symptoms of APS and Lupus Are unexplained as they don't know why they occur. And do you mean steroid injections? I'm also on hydroxichloroquine which has worked wonders...up till now.

  • And thank you Kerstin for your kind words :-) x

  • When i get my back shots there is a very limited steroids i can receive BUT when i do opt for the steroids i can't get as many so the area covered isn't as much and the only difference i see is it kicks in quicker so i want to get the non-steroidal shots and it some times is a bit more pain for a couple of days but to me it is worth it. I get them both shoulders-- neck to lower back along spin and across the small of the back to tip of spin .along spin a portable ultra sound is used to assure proper placement and because the depth of the shots safety. my entire back is sanitized prior to shots- i don't get any prep shots before the deep shots- that's just me i can get up to 36 depending on how much is used on the deep ones

  • I can relate to that

  • Can anyone tell me what it means to have lupus anti cougulant and factor v leiden

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