Early treatment

[Cullimorer]

Hi there,

I haven't yet been diagnosed with scleroderma, but at this point with the symptoms I'm fairly confident that it's going to be. My first rheumatologist appointment is in a few weeks. I'm 29 and male and here's a quick summary of the symptoms which these began 7 months ago:

- Close family history of lupus and rheumatoid arthritis (Sister, mother, grandfather, great grandmother).

- Positive ANA blood test.

- Raynaud's finger only one hand

- Burning/tingling feeling in left hand/palm/thumb, arch of left foot

- Telangiectasia on right hand and on nose

- Fatigue/feeling weird and run down

- Digestive issues (mucus in stool, chronic esophagus pain)

- Dyshidrosis (pimples on fingers)

- Moon shape on fingernails have disappeared on one hand and there's a few white spots under the fingernails on that hand.

I had a few questions that I can't find any information on and was wondering if anyone could help:

1. Does any of the medication I.e. immunosuppressants help with any symptoms such as digestive issues (esophagus pain) or improve circulation issues? Or are they just designed to prevent disease progression?

2. Are there any supplements I could be taking now that might help symptoms? I'm currently taking daily: glutamine, ginkgo biloba, B12. I can't tell if they're helping the Raynaud's or if it's the fact the weather has improved.

3. Has anyone in the UK ever received therapeutic plasma exchange from the NHS to treat scleroderma? I have heard about it's use in other countries but not here.

Thank you in advance for any advice you may have.

Thanks,

Robin

[GGhere]

Hello Cullimorer. Sorry to hear you've been lumbered with this disease. You have all the symptoms I started with and it took a long time before I was finally diagnosed. You ask about immune suppressant drugs - I've been taking the one called Hydroxychloroquine for 3/4 years without problems. My Telangiectasia has really calmed down. My legs were covered from toes to just above the knee in bright red very close together patches - horrendous. The rash was also on my face and scalp. That has calmed down too and I just get the odd red spot appear but they come and go. I have the oesophagus thing too but I find eating smaller meals and I was told to never eat anything after 7.00 pm - this works and I sleep better. I also have a thing called a reflux pillow which goes under my normal pillow - consultant advised me to get this and it does help. I think the suppressants just calm it all down a bit. Everyone's experience is different and I think we all get other symptoms to a greater or lesser degree. I have sjogrens syndrome too Have to dash now I'm going to art class. Talk later. Hope you manage to com to terms with it all. Best wishes.

[Cullimorer in reply to GGhere]

Hi Betsie my name is actually Robin,

Thanks for getting back to me. I'm not sure it will sink in until I actually get the diagnosis, which from hearing peoples experiences can take a while! Hearing peoples experiences here definitely helps above reading the dreaded studies on the full spectrum of the illness.

When I speak to the Dr in March 2019 I want to ask if anyone has ever been treated using the therapeutic plasma exchange (PTE) that I mentioned. I've read loads of stuff saying it can be extremely beneficial but no one on here seems to mention it so I'm worried that it's not going to be available through the NHS. My mother and sister live permanently on auto immunosuppressants and steroids - I have seen the very worse of their side effects. I am worried I won't have any other option available to me but to take them.

Anyway, not much to say on the issue yet as it seems to be progressing slowly, but new stuff does seem to arrive at my door each week/month, I hope the diagnosis comes soon.

[GGhere in reply to Cullimorer]

I think it's good to keep informed of what's happening in the treatment of our condition. Let us know how you get on. As we all keep saying, everyone's case is different - this disease is definitely NOT straight forward. Hope you and your relatives keep as well as possible.

[positivedaybyday]

Hi Robin,

Sorry to hear of your symptoms & it's more than likely you have the dreaded disease. It's going to be a long journey for you with many ups & downs. The main thing is to make sure you have a good team at the hospital who will arrange various treatments & support you. As each case is different in severity the treatment is aligned accordingly. I don't know about plasma exchange but I had stem cell treatment last year as my case was very aggressive but caught early so I didn't have any organ damage. I am a guinea pig but feel so much better since the treatment. My recovery is slow against the few others who underwent this procedure, but then my age may be a factor. It's another avenue for you to explore. Good luck xx

[SherrySanford65]

I have heartburn 24/7 with my Systemic scleroderma and the only think I can do is take Nexium and something called Aluminum Hydroxide Gel by Rugby. Your pharmacist should be able to order it. It’s not a prescription, and it helps with my heartburn a lot without having magnesium that most heartburn medicines contain that can cause diarrhea if used as often as I use it.

[Cullimorer in reply to SherrySanford65]

That's great, I'll get some ordered soon to see if it helps me as well! Thanks.

[tanya1981]

Hi Robin,

I’m really sorry to hear about your symptoms - whilst it’s possible you have the disease, I hope it’s not what you think or at least it ends up being a mild version of. I can’t comment on the immunosuppressants as haven’t taken any yet myself but I do recommend ginkgo, garlic, Vit C&E and ginger (+turmeric perhaps). I haven’t been regular on all of here but do alternate and think there is a minor positive effect.

As to your last question on the plasma exchange, I will highly doubt it’s available on NHS as I’ve never heard/seen that mentioned and I’ve done some thorough research, gone to a SRUK conference and stayed in touch with this community over the last 2.5 yrs.

Good luck and keep us posted!