Lupus... Who knows what...

[louiseamos]

OK.so had a load of crap pain going on since 22.. Back.legs.feet..I've always had this purpule skin thing when cold stresst.lost 2 babies.low white blood plates. Osteoarthritis in lower back.hips one up higher... My question.. I've seen 2 rumos..one said I've fribo.the other about socolis of my spine..about a year ago my fingers swollen.. Brain went..fianily sent to an decent rumotoligist.. She went over everything.. But all my bloods normal.. Told I've more likely bet on it I've lupus.hugus. and few other stuff..she gave me steroid injections. Said too come back 2 month.. It was the man .but really after all different crap been though saw him..put fell over fingers and like a MRI looked at finger lumps.heap now have sore bone lumps on finger joints..said very inflammatory.. And said although the lupus bloods always normal .too much pointing to lupus..gave me this medication.. Old day stuff.its for maglara???. My face gets sore and red..feet.fingers purple. Blue..why me.my 3 level DDD and osteoarthritis .hip props..what eles..my minds gone mad..dizzy spells ahh.I've tummy props.. So is any one in same boat...p.s my muscles hurt real bad too..like weak..hurt....any one help?????

[Noeleen]

Anti malaria drugs are commonly used to treat Lupus but we are not all on them. We all display different symptoms with Lupus, for example, I don't get the rash very often but I have other things tagging on like Raynauds phenomenon. Check to see if there is a lupus support group in your area and contact them, they may be able to help and also to tell you which is the best rheumy in your area.

[jamg3916]

The anti malaria meds are well known for causing tummy issues. There are several that can be tried I am on third lot and it takes a long time. As someone else has said see if there is a support group you can go to or ring, also ring the rheumy nurse they will have your notes and can give advice ....good luck

[MargaretGail]

speak to your GP about stomach protection I take Lanzoprozol because the anti malarials reak havoc on my stomach.

[Sam13]

Hydroxychloriquine the anti malarial is one of the first drugs they put you on when they feel or know you have lupusy. They then assess how effective that is before they introduce any more meds if they need to.

The Reynauds (your purple fingers (do you get toe/foot involvement?) can be treated with meds but having a pair of gloves with you constantly is a great help.

Pain relief wise you need to discuss with your GP as being in pain is not condusive to being able to cope with what is going on. I vary from needing MST slow release to Tramadol. Oramorph as a top up.

I do hope you get things to a more manageable situation.

Have they tested your blood for APS called sticky blood for your miscarriages as this can cause them.

Sorry about all info thrown at you. Take it piece by piece!

Take care.

[louiseamos in reply to Sam13]

Hi sam13. Sorry took for ever to get back?never even opened my computer. Yes they said I've APS. But my last letter said for first time its negative??. I've just had a letter for.lung.and heart tests..so there OK..also.I've been on morpie for few year feels like doing nowt at mo..my brains honing funny doing stuff then forget..I am lucky I've a good gp..I've had bad heart brun for few months..my letters got inflammatory with a ??

Shame its took years and this is the 3 rd rumotoligist.. My letter says probable lupus!!!I just wanna feel me a little..I was very I'll last year.thought I was gonna die?? Felt that I'll..I've also bad back..back sepeclist won't touch me ??? Advice on thing s be great