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inkedup

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About inkedup

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    Hebden Bridge, West Yorks
  1. Multiple autoimmune syndrome 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
  2. Multiple autoimmune syndrome 2

    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?
  3. Rheumatologist Answers.

    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.
  4. Multiple autoimmune syndrome 2

    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!
  5. Pain Fatigue Malaise and Chills

    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
  6. Positive lab test

    They are usually different, limited has association with anti centromere antibodies, whereas diffuse tend to be associated with SCL-70 antibodies.
  7. 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!
  8. Trying to make sense of it all

    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. My poor oesophagus!

    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
  11. My poor oesophagus!

    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!
  12. My poor oesophagus!

    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!
  13. My poor oesophagus!

    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
  14. Treatment for improving lungs?

    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:
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