inkedup

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Everything posted by inkedup

  1. Hi, It's been a long time since I posted here! Unfortunately over the past year I have developed Primary Biliary Cirrhosis, on top of scleroderma/Sjogrens and autoimmune thyroiditis, so I have 4 autoimmune conditions, which is pretty rare. I am also developing a lot of osteoarthritis, and this has been painful in my lower back. I keep being unwell, and on top of this have had huge stress problems which are making me feel very depressed. Is there any medications I should suggest? There was talk of medications to dampen down my immune system, but I think that I have been lost in the system. I also have pulsatile tinnitus; could this have any autoimmune connections? Thanks!
  2. Thank you for your replies. I think that the main problems experienced with the single steroid injection is dry and irritated skin. Otherwise, afternoons are better, although I feel super unwell in the mornings. I have booked a trip to India though, for some warmth and rest
  3. Oh blimey....I shall bear that in mind, although at the moment I don't think any more steroid injections are planned. What does it look like when you have thinned skin?
  4. Oh crikey, not it's all in your mind scenario!! I get so fed up with, 'you look ok'. Once I was told that I was a hypochondriac and it made me cry, you can't win, if you try and hide stuff people think that there's nothing wrong, and if you tell them they think that you're being a hypochondriac! What is interesting, in my case anyway, not one of my family and friends have looked into my autoimmune conditions or read about them. Having a 'hidden disability', not everyone with a disability is in a wheelchair, is a very difficult position to be in. None of us have to justify anything to anyone else.
  5. I have to say, that I have never had any waxing or waning of the conditions, just a gradual deterioration, and more gathering of more autoimmune conditions once I had got into my early 40's. It has all got so bad, and I've been feeling so unwell over the past few months that I had to stop work. On top of this, I was a very busy person, having graduated with a 1st class degree, and diplomas. It is really really depressing having to rely on benefits, and people treating you like you are stupid, as you are depressed and lethargic. I saw my rheumatologist on Thursday, where I am also part of a Scleroderma research group (interesting to see your fingernails under the microscope!) I explained that I was feeling absolutely terrible, exhausted with pretty bad joint pain, and they have decided to put me on Plaquenil. As it takes a while to work, I also had my first steroid shot. 2/3 days later and I am feeling reborn. In fact there is such a change that it is taking me some time to adjust!! I know that the steroid has a limited effect, so I am going to enjoy it while I can!
  6. Hi, Its also worth checking out that there aren't other contributory factors to your joint pain. Sometimes doctors think that Scleorderma is the cause of everything. Most of my joint pain has found to actually be osteoarthritis, which is quite severe. I have now been prescribed pain relief patches, which have given me a lot of relief. I don't think in this modern age that we need to be putting up with pain, which in itself is tiring and puts you off doing things. Lisa
  7. They are usually different, limited has association with anti centromere antibodies, whereas diffuse tend to be associated with SCL-70 antibodies.
  8. Hello! Please get checked for temporal arteritis, as it does have a few of the same symptoms, although I'm not sure about the dent bit! Lisa
  9. Really sorry to hear that Lisa X
  10. I went for an endoscopy last Friday. It shows oesophagal candida (again - I'm sure this is linked to omeprazole for my reflux!) and also a Hiatus Hernia that may need an operation. Along with the reflux, I'm surprised I have any oesophagus left! I am still waiting for the 'emergency' podiatrist appointment for my toe contractures too. I had a scan, which showed nothing mechanical apart from a cyst and fluid, so I'm wondering if it's neurological. On the plus side, the new meds (Duloxetine) has helped with my fatigue and joint pain, although sleeping is hard with it, as it stimulates me quite a bit (its like robbing Peter to pay Paul sometimes!) :emoticon-dont-know: Lisa X
  11. Hi Heather, The candida is in my oesophagus rather than my throat, so mouth wash wouldn't work. I'm on anti fungals for 2 weeks at the moment (gross!) Hi Shelley - I see the gastroenterologist in April, the people doing the endoscopy thought I might need surgery. I'm not being assessed for my toe contractures until May, so 8/9 months after they went funny. I think it's far too long, but think our NHS is struggling at the moment, but it's a false economy - it might cost more to sort it when they do need to, because it's been left. And my feet are starting to hurt a bit when I walk! Best wishes all, Lisa
  12. Hi Amanda, Yes, the Duloxetine does make my pupils enlarge! Doesn't make me see any better though LOL! I get a bit frustrated with the doctors poo poohing that PPI's don't cause any issues like this, it's common sense if you think about it!
  13. I think that long term use of PPI's means that it is a better environment for fungus (yuck) to grow. I don't think antibiotics help though either. I expect most of us rattle with all the meds we have to take!
  14. Hi, I've just had intravenous iloprost for my Raynaud's, however it also helps with the Raynaud's you can't see internally, and I have noticed that my lung function has really improved since having it done! Lisa :great:
  15. I've had OA since my early twenties due to hyperflexibility in my joints ( a strange combination with Scleroderma!). The thing is, we are all individuals, and do not fit into the same mould! I would have thought however that OA would show up in the x rays, it is fairly easy to see in an x ray and is not particularly insidious. I would suggest you have your thyroid checked out, as the cold, hair loss etc could easily point to this, I have this also and it is common, but has horrible symptoms.
  16. Calcinosis that I had in my thumb
  17. Sorry to hear of your latest challenge, and good luck with your recovery. My brother has just had all his bowel removed, as he has ulcerative colitis - i was just wondering if you have something like this?
  18. Hmmmmmmm.......feeling a bit anxious now, as I have just started taking this due to my chronic reflux.
  19. Hi, Are you sure this is primary Raynauds? It is extremely unusual to have ulcers with primary, and with your ANA screen being positive, I would suggest you go back and ask for further testing (ANA panel, ESR, ENA) and ask for someone to check you out properly. You really need to be seeing a rheumatologist that specialises in Scleroderma.
  20. Hi there, I live in the North of England, so unless we get a good summer/go abroad, then Vit D is in short supply anyway! It's not good for us to get low on Vit D, as that means Calcium doesn't work properly either. It's all a bit insidious too. I also have multiple autoimmune issues, so there's a tendency to blame the other condition. What I tend to do now is ASK for certain things to be tested, anything that makes a little difference is important to our well being, and I think we have to be in control over our own health. Doctors invariably look for predictable disease patterns, and it's very unpredictable to say the least!
  21. Hi all. I haven't been feeling very well lately at all. Then the other night I had a bath, and looked at my foot a bit more closely and thought it looked very odd. I realised that 4 of my toes on my left foot have contracted, they look claw like. I am quite worried to be honest as I have limited Scleroderma, and didn't think that symptoms came on so progressively in this way. I also have not found much info on the net, it's all about hands! Any help appreciated!
  22. New update - saw the rheumatologist; they are a bit concerned. She can't work out if it is muscular or neural, so I am being sent for scans, and if these are normal she's going to follow it up as something is obviously wrong somewhere. Now what I wonder!!
  23. Hi, I had a severe deficiency - it took about a year for my levels to get to the lower end of normal with the medications. The main symptom for me was muscle pain - yes, this has improved, and I am still taking the meds over the winter. The trouble is with Scleroderma is that it can make you ache anyway, so it's hard to know what is causing what. And with our chill factor, getting sunshine on your skin is easier said than done. One thing I would say though, is that if you have GERD, and are on a lot of meds as I am for it, I think it can block the absorption of certain vitamins, so check this out with your general practitioner. It's also worth getting a blood profile for coeliac disease, as this can also cause issues with absorption. Lisa
  24. Funnily enough, I am being tested for this, and am awaiting the results. For some reason I am finding that I am avoiding bread anyway, and some foods that are carbohydrate based, seem to make me run to the loo a lot! I have also read that there are a lot of links between the two conditions.