Raynaud's And Angiogram Results
Posted 25 January 2007 - 09:03 AM
Just an update..had my Angiogram last week for my raynaud's. They only did left hand, as I have a non healing ulcer on my index finger. Quite the experience. I didn't quite fall asleep like they wanted so it was rather uncomfortable with the injection of the contrast. Down right painful actually. But, the results confirm the vessel narrowing in my hand. (Vasculitis I believe they called it) As we speak, I am waiting to hear back from my Rhem. Dr. on potential arrangements for the prostacyclin infusions. I had this last year, with good results..so we are hoping for the same this time..if it ever happens! We have been talking about this since the beginning of December. The Dr.'s have tried new meds such as Viagra and Lisinopril as well as upping my Norvasc. The results have been disappointing. I am still pretty blue alot of the time. We are in the middle of a cold snap here in the Northeast so every outing is thought about twice! I am fortunate to work from home most of the time, but had to go into the office a few days early this week. I don't miss the cold morning commute... doesn't matter how long the car warms up, the steering wheel seems to retain the cold. I feel it right thru my gloves. I have tried driving with mittens, but as I have a manual transmission, it is very hard to shift, especially with hands that don't work so good anymore anyway! We are looking at a new truck in the spring, and I have several items on the list of musts.... Automatic, heated seats, (steering wheel too if possible) and an automatic starter)
But I am getting off topic... my question to anyone with experience with the prostacyclin infusions is, How many times can these be done before they become ineffective? My Doctor's have been reluctant to do it this year, for reasons unknown...even though I responded so well to them last year. I understand the procedure is risky, but, I am willing to take the risk. Spending 3 or 4 days in ICU is not alot of fun. But at least I made it thru last winter without any more ulcers and the raynaud's attacks were less severe.
Lots of warm wishes!
Posted 25 January 2007 - 10:33 AM
I'm sorry you had an uncomfortable experience with the angiogram! All these horrible tests we have to undergo.......!!!
Just two things I noticed when reading your post. First of all, for some time I was on 120mg of Diltiazem CD, a calcium channel blocker, for high BP. As a side effect it controlled my Raynaud's well.
However, last year my BP started rising a lot, so my doctor took me off the Diltiazem and put me onto Norvasc, also a calcium channel blocker. I *think* the Norvasc may have started to bring my BP down a bit, but I started getting Raynaud's again in a way I hadn't had for ages. Because of this I asked to go back onto Diltiazem, and am now on 360mg per day, and also have to take Doxazosin, which is an alpha blocker to control the BP. But my Raynaud's is back under good control again. Sometimes we need to experiment with different drugs, even though they are of a similar sort. Everyone is different, and we react differently to drugs too.
The other small thing which may be of help....... prior to having to give up driving, because I could no longer walk, I initially had severe trouble with my hands, both with Raynaud's and pain. To help with holding the steering wheel I purchased a sheepskin steering wheel cover. This helped far more than gloves, and it doesn't restrict your hands.
I'm sorry I don't have any personal experience with prostacyclin infusions, but maybe someone else here has had them. As you have already had good results with them, point this out again to your doctors, and politely ask exactly why they won't do them again. I presume you haven't already had to go to ICU because of them?
Posted 25 January 2007 - 11:56 AM
Wow, I am really sorry you have to go through all of this. I feel so lucky that my Raynaud's has never been as bad as those of you I read about. Just wanted to give you a big WARM hug and let you know they do have cars that have heated steering wheels! My husband sells cars and he brought one home for me to try. LOVED IT!
Let us know what your doctor decides to do. We are here for you.
Posted 26 January 2007 - 04:11 AM
Thanks for the warm wishes... also, thanks for the tip on the sheepskin! Why didn't I think of that? It is on my list for the next trip to the store. I am glad to hear they DO make heated steering wheels!! That is my idea of luxury! Thanks for the info on the meds, I will probably ask my doctor about a change...even though this is my second calcium channel blocker. I was on Procardia for about 9 months and then switched to the Norvasc. then they recently added the viagra and lisinopril. I feel like a science experiment! But, like you said, everyone responds differently to different meds. My blood pressure is normally low, so add in the Norvasc, Viagra, and Lisinopril,,and you have a very dizzy, lightheaded woman! My doctor has cut the dose of the Viagra down to 50 mg per day from 100 mg...hoping that would help the dizziness, but it hasn't helped much.
I am hoping that like last year, after the infusions, all of the meds will work much better.
Also, I had an EMG done as well a week or so ago, and the results showed no compression of the ulnar nerve (good news!) but no answer as to what this numbness could be from. To quote the Neurologist, it could be a whole lot of little things going on... good to know, huh?
Posted 26 January 2007 - 04:55 AM
Posted 26 January 2007 - 05:16 AM
yes, you did mention that...she did mention that if I start having pain in my neck area, she will want to run some other tests.... I am guessing that would be for Throacic Outlet? So far, no pain in my neck, so we are going to put this problem on the backburner for now.
Posted 26 January 2007 - 05:18 AM
Posted 31 January 2007 - 06:41 AM
Spoke with my Rhem. Monday, I am officially on the "board" in two of the ICU's both Pulmonary and Cardiac for the prostacylin infusions...so that means I am waiting by the phone for the call. But, obviously someone allready in the hopital is going to get the bed before me! The waiting is wearing on me... I just want to get this over with. The hope is that I will have similar results as last year.. improved profusion in my hands and feet. Meanwhile... just trying to stay warm and busy.......I would love to hear about anyone elses experiences with prostacyclin infusions...how they worked for them, how long they worked for them, etc...from what my doctor tells me, some patients need them every three months or so,,so I guess I am lucky if I can get by with just a once a year "Anti-Freeze" treatment.
Stay Warm All.
Posted 31 January 2007 - 07:53 AM
I am glad to hear that you are on the "boards" for the infusion. I hope you get the call soon and it makes a world of difference for you! Sorry I have never had the infusion so I can't give you any input there. Please do keep us posted.
Posted 01 February 2007 - 10:53 AM
Posted 01 February 2007 - 12:15 PM
Welcome to the Sclero Forums! I am glad you have joined us but sorry it is because you have been diagnosed with sclero for 10 years! It is good to see you posting so soon after joining. I hope we will hear lots more from you.
Posted 01 February 2007 - 01:44 PM
Welcome to the Forum! And I'm sure from your user name you must be a cat lover! Do tell us about the "furry ones". I have 3 cats all from the same litter, and you'll see one of them in my avatar. All 3 are in a photo in my album.
I particularly chose a sheepskin steering wheel cover, as my hands were so sore, I could hardly touch anything without wincing. The fluffiness of the sheepskin really cushioned my hands and helped a lot.
Look forward to seeing more messages from you.
Posted 02 February 2007 - 10:20 AM
Posted 02 February 2007 - 02:01 PM
When you're a cat lover you definitely can't go without cats for long! You get withdrawal symptoms!
I had my first cat when I was seven, and haven't been long without cat/s since. I was going to have 2 when I got our 3, but I couldn't leave the last lonely little one on his own. They are great mates as they've grown up together. The 2 males are stripey tabbies, and the female is a slightly stripey grey tabby; very dainty! Sam is the one in my avatar, and the other male is Pixel, as he was the smallest. Jenny is the female.
When I first got the cats I wasn't ill, but unfortunately came down with scleroderma some months after getting them. I looked after them for their kittenhood, but when they were about a year I was too ill to keep looking after them. Luckily my husband likes cats, and has looked after them ever since. They all still like me though too! They are now nearly 11.
Posted 03 February 2007 - 05:11 AM
I am jumping in a little late here.... I am so glad that you are on the list! Hopefully things will get moving and you will get the infusion soon. I think we have been spoiled this year in the NE with the warm weather this winter because the last week or two have been awfully cold and I have been miserable.
Please keep us updated on your progress!
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Posted 09 February 2007 - 10:32 AM
Good news! I finally got the call last Thursday, and went in for the Prostacyclin Infusion... it went well, other than the nasty side effects..got home Monday, and I am feeling better, It is nice to have feeling in my hands and feet again.So I should be able to make it through the rest of the winter with a little more comfort. It isn't a cure, but it does help.
Thanks Pat, I have tried the nitro paste, last year and this year. Unfortunately all I ever got from it was some very severe headaches..
Thanks for all of the suggestions, keep them coming!