Help please. Trying not to make a fuss.

[puffyface]

I won’t bore you with too much history...but there is a bit. Was diagnosed with Hashimotos about 5 years ago. The meds made me feel dreadful, so went back to Endo who did a full blood panel. Ana 1.1280 and Ro and adrenal antibodies. I was initially diagnosed with primary Sjögrens...then a Sjögrens/lupus overlap. I started seeing a rheumy who specialises in Sjögrens because I felt that was sensible. I take Hydroxy and she has said to tell her when I feel I need more help and options are methatroxate, arizromycine? and one other (sorry about spelling). Anyway, my appointments have obviously been cancelled at the moment...but am feeling so much worse. I know that autoimmune diseases can change and I am thinking that I am moving more towards sle than ss. Can anyone advise on signs/symptoms? Hands and feet joint pain and burning getting worse. Calf muscles painful all of the time and get worse at night. I wake in the morning and am so stiff I just have to lie until it softens. Outer hips sore...ankles...sharp knee pains.It feels like bones, muscles and tendons on both sides..hands and feet worst. It takes days for muscles to recover from even gentle exercise. SO tired that some days I can’t get out of bed. Pink over my nose and cheeks is more obvious. Eyes blurry and gritty. Brain in FOG so that some days I can’t concentrate at all but others better. Lots of tummy issues. Skin has never liked the sun (Scottish!!)...it used to make it itch and bumpy...now just red. I just feel really ill and don’t want to bother my doctors just now unless it makes sense to. I don’t have organ involvement as far as I know...but it would be very helpful to know any thoughts. I am 50 and a woman so hormones are all over the place. I’ve often thought that hormones make symptoms worse..so maybe that’s all it is.

I would be grateful for any thoughts. 😊

[Hidden]

Hi and sorry you are feeling so rotten. Have you got a number for rheumatology you can phone perhaps and ask for a phone consultation about this? Hormones of menopause are very powerful and can trigger new symptoms, flares and further autoimmune diseases.

I wouldn’t get too preoccupied by which disease is most active now but for what it’s worth my odds would be on Sjogrens because it tends to progress more with age. And your symptoms all sound very like Sjogrens, which can mimic RA very well regarding all the pain you describe. The treatments your rheumatologist has spoken off would be pretty much the same whichever one it is. Maybe you could ask for an IM steroid shot to tide you over while a new dmard takes effect?

Best of luck getting help 😊🌻

[puffyface in reply to Hidden]

Thank you very much for replying. You’re right...it doesn’t matter which is rearing it’s head other than treatment licensed for SS is more limited in uk. I definitely feel that hormones are playing a huge part just now. Hope you have a lovely day. 😊

[Hidden in reply to puffyface]

I know treatment options are very limited for SS. It’s an awful disease and so disregarded compared to Lupus and others.

For me Mycophenolate Mofetil has been the best but I have also been diagnosed with Scleroderma - which doesn’t have many effective treatments either apart from ones to improve circulation and GI. I would like to have been able to try Rituximab or IViG to try to prevent my SS progressing to this stage - but for some reason neither of these overlapping connective tissue diseases qualify in UK. Too expensive?

I start Iloprost infusions a week today so hoping this may help circulation and pain🤞🏻🌻

[puffyface in reply to Hidden]

What do you take for GI? I have tried to keep meds just at hydroxy at the moment. Try amitrip for nerve pain every once in a while...but it turns me into a zombie. I have duloxetine to try instead but am not going to until I work out my basic meds. Have just (last year) been in a clinical trial...but blind so still don’t know. It was belimumbab and Rituximab. I don’t think I was getting the belimumbab...but think I did get 2 Rituximab infusions and felt good. Honestly feeling so rubbish at the moment that I’d take anything..but want to be sensible and work out what’s going on first. I think I’m going to push for Rituximab...even if I have to pay for it.

Good luck with Iloprost infusions. What are they? Really hope they help. Some days it’s all just too painful...and yet I so want to be a good mum and wife. 😊x

[Hidden in reply to puffyface]

Aww I know things can get so desperate that we would take pretty much anything.

I’ve been there. I take esomaprazole 20mg once or twice a day and regular sips of Gaviscon. With Scleroderma there’s no choice about these. I also take a prescription laxative, sometimes Laxido (which I hate) and lately have started using suppositories. Can’t say that this mix nor a very strict, non processed, low carb diet, control my symptoms well yet.

But hopefully, combined with Mycophenolate 2g, it will.

Also B12, D3 and I’ve just started Magnesium too. x

[Spanielmadlady]

Hi puffy face.......just a comment regarding hashimoto's. I've had hashimoto's for about 9 yrs now.i was put on thyroxine but it made no difference to my bloods and I felt dreadful.after some research I found out about another drug which is rarely offered as its unlicensed in the uk.its called armour thyroid and comes from pigs.i asked my endocrinologist about it and she agreed I could try it.ive been on it ever since my bloods are stable and many of the symptoms associated with HT have gone .I know it's a hard slog but keep going .its taken 5 yrs to get my head around my illness and get on a even keel but you will learn to adapt and you will develop coping strategies.kind regards xx