Joint flare-help😕

[mags92]

Hi all,

First time posting but have been a member for a while and always get great information from this site esp just reading and knowing you are not the only one!

Anyway I have been on Humira about 3 years from when I first got my behcets diagnosis and it has been working pretty good-could not be without it!

Last week I came down with a pretty bad throat infection and of course could not take my Humira

I have had a few diff illnesses of the years and had to go off it until cleared up but this time I have hit a seriously bad flare from not been able to take it- I have head to toe severe joint pain- nothing I have ever experienced before-I am immobilised with it!

The doctors has given me super strength co-codomol but it's not really working and I'm on celebrax

Have any of you guys any idea what else I can do/take - I am on antibiotics for another week so have to live without Humira until then-at this point I won't be able to go to work- I can hardly get dressed nevermind drive and work!

Any advice greatly appreciated 👍😊

[sian35]

Hi

Hi Mags,

You have my sympathy. In the same boat myself. very stiff joints and pain alll over from having to stop my humira in early Dec. and them my mycphenolate due to shingles which has not shifted. Been on so many mega doses of antivirals as well so shingles is settleing down. I am already on a pain killer called arcoxia, prescribed by centre of excellence, - a strong anti inflamatory used at 90mg for rheumatoid arthritis. Opiod painkillers are strong but not always best, so i hear on radio, for musculoskeletal pain. Hot water bottle a tried and tested method as well. . Arcoxia maybe worth a try but his is just my experience not a medical opnion.. For this flare have been given, but avoided taking,tramadol as well as the arcoxia. Tramadol etc you so tired.

Hope you can restart the humira. I have found the humira worked best on the joint and all over in your boans type of pain I get. Interesting to hear it helped you too with this.

best wishes

Sian

Humira not keeping my eyes quiet so drs thinking of alternatives (was on a double dose in the end). Do you have uevitis if you don't mind me asking, and if so does the humira help?

best wishes

Sian

[mags92 in reply to sian35]

Hi Sian,

Thanks for getting back to me...oh the dreaded shingles! I have that many times over the years..horrible thing! I get it on my face😕 I am on celebrax which I think is the same as arcoxia but unfortunately not helping at the moment...I think every joint in my body is inflamed from the neck down! Also I seem to get slight relief for a couple of hours in the morning and then I start to go down hill rapidly to point where I can't get off the seat or move in bed! Do you get morning relief? Yes the cocodomol just seems to make me dopey but doesn't do anything for the pain!

Humira has been a god send for me in relation to everything behcets related - I got very bad genital ulcers, along with mouth ulcers and joints- I have had no ulcers since I started it which is amazing- luckily for me Sian I don't have any eye involvement-I'm sure that is so hard on top of everything else!

So I may get the hot waster bottle out then if painkillers can't help me! I'm in for a long week!

Thanks again Sian ☺️

[Pvancourt in reply to mags92]

For relief with heat try Thermacare. It's an over the counter heat pack that last over eight hours. It's so nice on sore joints or tight muscles.

Hope you both find relief soon.

Paula

[mags92 in reply to Pvancourt]

Oh thank you Paula..u will try that also👍

[2106]

Hi I am sorry to hear that you are so poorly. Just a couple of suggestions. I suffered from joint pain really badly, thought one of those things I had to live with. Got worse and it felt like the pain was in my bones, seems silly but my big toe hurt the worst. This came and went. Eventually I was tested for Vitamin D found should be between 50 - 150 I was 24. Been taking a high dosage now for a month my pain has gone from my joints and my bones, may be worth you having this done. Also I take manuka honey 10 or 12+ morning and night this has also helped. I am not on any medication as I try to manage this with natural products. Coconut is brill as well. If I need steroids etc I will take them but prefer not too. I hope this helps. All the best Biddy xx

[nurse_ratchet]

Warm baths in epsom salt. Naproxen/Aleve. I also rub Voltaren gel on my stiff areas after a hot shower/bath. Better luck to you

Gen

[sian35]

Good point on vit D 2106. At one point everyone who was referred tLondon COE had low vit d. Mine was tested at the hammersmith and was so low Boots the Chemist made a special on demand tablet for me.

Hope pain settles down soon for you Mags. My stiffness is worse in the morning. That all over in your bones pain tends to be worse the day after, or in the evening after I have been doing more than i probably should. rest helps but hard to do sometimes.

best wishes

Sian

[mags92]

Thanks guys for all the helpful suggestions! I will check vit d Biddy and also never thought of Epsom salts/rub etc Gen...my sister also just dropped over manuka honey! Every little bit helps anyway..

Funny Sian, I am always worse at night even if I rest all day..Hard to try to figure out behcets...no rhyme or reason..sometimes I could run a marathon, other times I can't open a bottle/walk upstairs!

Thanks everyone

Emma(mags)