Posted 25 October 2009 - 12:42 PM
I am running into some issues due to my Raynaud's (RP). My rheumatologist switched me around on all kinds of meds, one making me sicker than the other. She suggested prostaglanin IV, but said I had to be in hospital for a week, etc. and I went online and looked at the side effects, more than 10% of people experience apnea.... kinda scary! Anybody went through a round of this treatment? What did you experience and did it help?
Thanx....somehow I'd rather have the 'finger of ice' (hey that's an idea for a halloween costume and prep will be very cheap!! ) than apnea!
Posted 26 October 2009 - 05:22 AM
We have some information on our site about prostaglandin that you may find helpful.
I had this type of IV infusion over a week whilst in hospital. I was not a pleasant experience but all side effects stopped when the infusion did. During the infusion I made the most of anti sickness and pain medication to make it more bearable. It did make a difference to my Raynaud's phenomenon (RP) but thankfully my Raynaud's is not so bad as to need further infusions.
I hope this helps and take care.
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Posted 26 October 2009 - 11:34 AM
I have I/V prostacyclin treatment for Raynaud's every 12 weeks. It really is not that bad - honest! It gives me a bit of headache , which is controlled by mild painkillers and sometimes gives me slight nausea. I have the I/V for five days - running constantly at a low rate (1ml an hour) rather than having it at a higher rate over 6 hours a day- the side effects are much less. Having had both regimes, I would recommend having it running constantly at the lower rate if that is possible. The treatment makes a huge difference to how my hands feel and to the amount of nicks and sores that I get. It is a pretty routine treatment for Raynaud's in the UK and is considered to be very safe.
Quite honestly the worst part of the treatment is the boredom of being in hospital for 5 nights!
Posted 27 October 2009 - 01:52 PM
Thank you for your kind replies!
My rheumatologist has me on pletal and procardia xl for now... she said something like she was unsure whether this treatment (prostaglandin) was even available in my town, and like she normally does not hospitalize people. (weird??)...Plus I was a bit freaked out too.
Personally I would not have a problem staying in bed for a week (catching up on sleep and R&R )... but nausea and dizziness does not sound like fun at all.
Posted 11 November 2009 - 08:17 AM
Sorry for the late reply, I missed it, due to being out of town for a few days. I have the Prostglandin IV every year for my Raynaud's. My doctor thinks it could end up being more frequent (like Lizzie) than just once a year so far. All I have to do is say "Uncle" and she sets the wheels in motion. The side effects can be quite nasty as Lizzie mentioned,. I have the higher rate drip, they start it slow for twelve hours to start, and then the bump up the rate..which is supposed to get me out of the hospital after 72 hours, but last year, I had a complication of extremely low blood pressure. 67/38...surprised I still had a pulse! But they ended up stopping the infusion for two days, and my home meds, which include norvasc, revatio, cardua, lisinopril, and aspirin for the Raynaud's. Guess the combination was way too much..(ya think??) So I ended up being in the hospital for six days last year.
The plan is this year I have to stop the home meds for two days before coming in for the infusion. Probably within the next two weeks. Side effects for me are severe headache, muscle and joint pain and swelling, and all over body aches. Pain meds do help that. They do subside after a few days after the infusion is complete. But, for me it works, keeps the attacks from being too severe, and I haven't had any ulcers for the last few years. Although last year I got frostbite on one of my bad fingers just by touching a block of frozen ice cubes in my freezer without my gloves on. It only took less than 10 seconds for the frost bite to happen, it was that quick. Needless to say I was in a week later for the infusion. So there are pros and cons to it, it was covered by my insurance thus far.
Posted 12 November 2009 - 06:13 AM
I have had this done, over 3 days, the infusion being done over 10 hours each day. I had the headaches and sickness but they did give me anti sickness and pain medication to help. But I found that it only worked for me for about 2 weeks so have not had it done since, I now take liquid prozac which seems to help a little.
Like Lizzie says the worst part is being in hospital!
Posted 12 November 2009 - 07:55 AM
I have never had prostaglandin treatment. However, I did/do have severe Raynauds with digital ischemia, ulcers and the like. I am now in really good control, so I thought I'd pass along some treatments which have helped for me. They may or may not be appropriate for you. However, I think it's always best to know all of your options.
My doctor was thinking about doing IV prostacyclin treatment (NOT prostaglandin--they're different but sound alike), but ultimately I did not need it. I had tried revatio, nitroglycerin, IV heparin, coumadin, which I am off of now, and norvasc and aspirin, which I am still on.
Before we could get the IV approved by my insurance, they also had me try a prostacyclin inhaler which was a 30 min inhalation treatment several times a day. I didn't like it, but it's basically the same drugs (Iloprost) but in inhaled form. I am not on it anymore.
I was hospitalized for severe Raynauds with persistent digial ischemia... looked like I might lose at least a finger. During the hospitalization I had a sympathetic nerve block which saved the finger, and was started on Tracleer (bosentan). For me, a world of difference. Bosentan is fabulous for my symptoms. As I understand it, it has been a little hit or miss in clinical trials. Individual responses to these treatments are obviously quite variable.
I next went to Mayo Clinic and got a home vascular pump which I wear at night. It pushes the blood into my hands. It really helps heal ulcers and for me has improved the blood flow in my hands. There are no side effects--it's just a little machine with arm cuffs that buzzes and whirrs while I sleep, and creates pressure on the arteries in the arms and more or less forces the blood into the fingers. As far as I know, Mayo store is the only place that sells it. Things may have changed in the past couple of years, though. There is a researcher at Mayo who has published his work on scleroderma ulcers and this pump with good results.
So, if you are looking for possible alternatives, these are some. The bosentan and the home pump are both quite expensive, as are IV or inhaled prostacyclin treatments. Expect an insurance fight on all fronts. I have heard good things about all the treatments, but for me with young children I didn't want to be in the hospital a week every 6 weeks, which is what my doctor had suggested with the IV treatment.
AGAIN, everyone is different and will need individualized therapy. Just trying to share some treatment options with published clinical trials to support them for those of us with severe Raynauds.