Huge flare up feeling rotten.

[debatwistow]

Hi Everyone,

Not been on for a while but now need some support. I feel awful, ache in muscles and joints, tinnitus bad, tired, muzzy. INR ok at 3.6. Started taking hydroxychloroquine again, high multivitamin (no vitamin K) and vitamin D. It seems to be when I go out in the cold although I'm wrapped up warmly. Family has the odd cold, I was wondering if having a virus kicks off APS. Taking co-codamol for the pain. I seem to feel rotton more often now. Anyone got any words of wisdom?

[HollyHeski Administrator]

Its not unusual for us to gave flares along side viruses/stress and over working (esp at this time of year).

Any reason you stopped taking hydroxychloroquine? It can take a while to get back into the system.

When I have flares, I have found just paracetamol helps rather than co-codomel. Drink plenty of fluids.

Hope you feel better soon xx

[debatwistow in reply to HollyHeski]

Hi, thanks for your reply. I will try just paracetamol to see if it makes a difference. I don't take hydroxychloroquine all the time as I am concerned about the possible effect on my eyesight. (Call me paranoid but as a chemist myself I made an informed decision). It's comforting to know that it's possible that viruses can cause flare ups, I think I'm imagining it sometimes.

[MaryF Administrator]

Hi, we are in virus season, I know I flare with other people's viruses, particularly anything which has 'strep' attached to it, but viruses in general, even if I do not actually get them in their entirety. I keep a close eye on my Ferritin, Folate, B12 and D, alongside my regular Thyroid checks which do help me feel better. However I think some of it we just have to put up with. MaryF

[debatwistow in reply to MaryF]

Thanks MaryF. I do tend to get sore throat and/or cold symptoms without the full blown cold so maybe that's what is causing my flares. I will try the supplements you advise and see how I go. Just feel thoroughly down in the dumps and being at home (I don't work now) not feeling well enough to get out is rotten. Husband is wonderful but I don.t really think he understands what this feels like.

[daisyd]

Do you think you might have flu that would give you all your symptoms as well

[debatwistow in reply to daisyd]

Don't think so. Doesn't usually go on to develop any other symptoms.

[Lure2]

Hi,

I know you wrote earlier about your 16 year old son and that he had symptoms.....therefor I wonder if you (after 10 years with APS ?) have a Specialist of autoimmun illnesses (you live in Great Britain) as it is exstremely important to get the right treatment.

You say you have a wonderful husband but I suggest you buy "Sticky Blood Explained" by Kay Thackray. That book is a very good book of APS and useful for relatives to better understand how it is to live with this illness.

Best wishes to you and to your family!

[debatwistow in reply to Lure2]

Thanks Lure2. I have got that book. I see specialists at St Thomas' in London. Next appointment is in May so will keep a diary for discussion then.