Have seen earlier post about iloprost that have left me confused . Reading some of Mads research( excellent as always) about AV shunts makes me wonder that with increased circulation are these resolved and can small fibre nerves heal.I assume the results are temporary or we would all be lining up,. Are prostaglandin infusions more useful if there is reynauds and EM ? Are the infusions painful and has anyone had them regularly enough to see if there is long term improvement?
Great questions Tizzy. I am booked for Iloprost infusions but they wont happen for a long time, so it would be good to hear others' experience. ajh
I haven't tried it as of yet but would love to hear feedback from those that have.
I am still waiting the long wait to try Lidocaine infusions. I have been told it is a go but the process of getting it all together and the insurance go ahead is taking forever!!!!!
Good luck with your infusions ajh. When you get it done please let us know how it goes.
Take care,
Alina
My husband is in hospital now for his second lot of Iloprost. The first infusion helped for about 6 weeks. After that back to heat attacks to a constant flare in February/March. His feet were one big extremely painful ulcer at the beginning of March.
He got Tapentadol to help with pain, the wise doctors at the pain clinic said that it does not matter if he gets addicted as it does not look like his condition will be cured but it improves his quality of life, helps him sleep and generally he is happier, this is in answer to dke worry about weaning off opiods.
But back to Iloprost, we will see if it helps this time, he has also been started on Prednisolone 15mg and that helped very much indeed. All the ulcers have healed but as the Iloprost infusion was already scheduled our neurologist told us to go ahead. We have 2 specialists, one thinks his EM is secondary and is looking for the primary reason, the other that it is primary and has all but given up and only prescribes meds that help with the symptoms. Next step is IMG infusion which the neurologist is organising.
I am starting ivig in 2 weeks. Let me know how your husband does. Just got approved by my insurance for 4 days of infusion times 3 months. I had a nerve biopsy which confirmed small fiber polyneuropathy.
Cont. my neuro believes it is autoimmune b/c I responded to a course of high dose prednisone (70mg for a month with a fast taper). Unfortunately, my symptoms returned as I weaned. My labs continue to be negative and my genetic test was negative as well . Please keep me posted on the ivig.
Just came back from hospital. As for side effects, he is feeling sick/nauseated and has a strong headache. He was counting hours till the end of the first lot. Unfortunately this time all his veins could not take the IV line so they have put a central one, straight to the right ventricle. Two lots to go, out on Saturday. I think he had less side effects the first time, however his feet were in a worse state so he might have perceived it differently (????)
The ulcers, note multiple, were there before the infusion, after the first lot they healed over some time but this time he had miltiple ulcers with huge lesions on his heels and because he also had a neuropathy, the rheumatologist suggested prednisolone which worked like magic, before we got to the scheduled Iloprost infusion they were all healed, 6 weeks all together!!!
It does look like a secondary case of EM. Now they have to find the primary cause.
Tizzy said:
Thats great that your husband is getting such good care from his doctors! It sounds like they are going the extra mile for him,which must be a huge relief for you as well as him. Th Iloprost gave him a 6 week break from the pain of flares but caused an ulcer? or was the ulcer there before infusion? I seem to recall that your husband had problems with joint inflammation and had been taking Mobic , so I suppose the prednisone helps with that as well as general tissue inflammation.
Was the iloprost painful , doctor here seemed to imply that it would cause a reaction like a flare initially ?
Thank you for the information, hoping your husband continues to get relief Tizzy
Jen, apart from a husband with EM I also have a son who has dermatomyositis, diagnosed at the age of 21,13 years ago. He was on 80mg of Prednisolone for 2 years after that the weaning took ages, with I think 2.5mg reduction each time as when they tried to do it faster his CK levels shot through the roof. My point is if it helps your EM perhaps a gradual withdrawal is the (way???)
jen said:
Cont. my neuro believes it is autoimmune b/c I responded to a course of high dose prednisone (70mg for a month with a fast taper). Unfortunately, my symptoms returned as I weaned. My labs continue to be negative and my genetic test was negative as well . Please keep me posted on the ivig.