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Hi all!
Sorry for triple posting, I like to try and keep all my questions in separate threads as to not get confused!
Among the many things my mother in law suffers from, digital ulcers is a pretty big one. Pretty much all of her joints on each finger are cut/blistered, and she is getting regular infections inside the ulcers. Very uncomfortable, and of course continually taking extra antibiotics to fend off the infection on top of her AP therapy is not a good thing.
A bit of searching today led me to find Iloprost, brand name Ventavis. We handy heard of it before, but we now know it’s a vasodilator. She used to take nifedipine a few years ago (calcium channel blocker), but no longer does. Having read around Iloprost a bit, it seems widely used with Scleroderma patients to help them specifically with digital ulcers, and Raynauds etc, perhaps more specifically so than something like nifedipine.
As far as we can see, trials have only ever been conducted with infusion/IV doses of Iloprost. Unfortunately, here in Ecuador they only have the nebuliser version, which is widely used for Pulmonary Arterial Hypertension. I’ve not found anything that specifically links the nebuliser version of the drug with scleroderma.
We are going to see a rheumatologist asap to find out more, but as always we wanted the wise knowledge of the forum to understand more. Do you guys think the nebuliser version would be OK?
We are hopeful that if this medicine has the potential to work as it is described as doing so, it could generally help her circulation. This would in turn help the pain in her feet, her light headedness, and might actually improve her day to day condition all round.
Sorry to be vague on questions, I guess I’m just wondering whether you guys feel it would be something worth considering? Or if anyone has had any experience before? I did a search on the forum, and there are a select few posts referring specifically to infusion version of the drug, and these posts were a good few years ago now…
Thank you everyone as always!
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona
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