Aneurysms in my hands

[jakekell]

I had a lot of advice from quite a few of you to get back to my Rhemy, well got a new one when got home from FL. What I thought was cyst in my hands turned out to be aneurysms, surprise just not a good one. My inflamation was very high and going on the RTX infusions soon, which from what I read could help the aneurysms settle down/may even go away. I guess letting it get out of range is not good at all, guess I knew that maybe hiding from the WG's a little.

Wondering if anyone else out there had this, doc's said not rare to form in the body due to the vasculitis issues. My kidneys have been good even though it is common for some to get aneurysms around or by them.

Head is spinning with this info, had this 8 years, but they think WG's really began about 15 years ago just not found that early.

Thanks for the ear and any advice__Mary :ohmy:

[windchime]

Mary I've not heard of anyone with the aneurysms, but it makes total sense since we can get blood clots much easier. The vasculitis could cause the walls of the blood vessels become weak which would allow them to bulge for lack of a better word. I hope the RTX helps get everything under control for you. My prayers are with you.

[jakekell]

Thanks Cindy prayer are always good! I did some reading and just what you said about the vasculitis is pretty much what the things I found said, we just aren't always aware of them. The infusion maybe a big help need I say that is my hope.

Mary

[mishb]

I have a cyst in my left wrist on one at the top of my foot above my right ankle.

Rheumy advised that they are cysts and are very common in vasculitis.

Had never heard of them being aneurysms, but what Cindy says, makes sense.

Good luck with the RTX infusions when you get them Mary

[jakekell]

Thanks, I found one post on this site for I think a was John that had an aneurysm from this mess we have, it gave me hope the infusion may help as his doc said keeping the inflammation done was the key.

I did or so I thought so good for quite awhile. So glad I found this site and people urged me to go back to a rhemy (where I should have stayed) as I really was burying my head in the sand hiding from this awful disease. I am tough, beat cancer may not beat Wegs in the end, but will give it a hell of a run lol!

We just had our 4th Great-Granddaughter and a 5th coming in December so lots to look towards. I love your quote!

Mary

[jakekell]

The RTX had to be stopped 50 mins into it as I reacted. I have an appointment for Cleveland Clinic Dr. Alexandra Ville-Forte on August 14th she is suppose to be one of the best around for weggies. We shall see what the next drug is and hope if reduces the inflammation, which was told by another doc it will open the blood vessel maybe able to get a handle on this problem. I am in an area that only has 7 rhemys and none that are able to really handle this as I have learned lots from this site. I have learned more from this site than the doc I have had so Cleveland Clinic here I come!

[Jaha]

I'm so glad to hear you are going to see Dr Villa-Forte at CC. She has seen me since dx'd in 2010 and I go about every 3-4 months for now. How far are you from the clinic? There are cheaper places to stay than at the Intercontinental place at the clinic, if you need info on some places send me a private message. You will definitely need to take everything, that is, results of ct scans and maybe last labs with you.
All the best to you!

[jakekell]

Thanks for the info and I take it you really like her? We are in the Kalamazoo MI area so not a terrible drive. We got a room at the Double Tree Tudor Arms for $119 a night so not to bad and they have a shuttle. I had everything I could faxed over and ct scans are old this rhemy here hasn't really done anything. I had a couple of x rays from a fall that showed I was alright from the fall so doubt she would want that. Do you think she would want a ct scan that is several years old?

[Jaha]

I'm glad that you already have booked your room. She will probably send you for a ct scan that day and do lots of blood work. Let us know how things go at CC. Have a safe trip some and I hope you find out some answers and get the proper tx.

[jakekell]

I will let you know and I am sure your right about the scan. I am feel really good about getting some "real" help with my weggies.

[Ruotsi1]

I am going to see dr. Villa-forte on August 12th. I am really excited as I have heard many great things. One thing I would recommend doing is having a paper copy of everything that is faxed. I've heard several stories where the docs didn't end up receiving he paperwork or it got lost in the shuffle. I am taking my initial biopsy results, original ct scan, recent X-ray, and the last notes from my rheumy and Pulmonologist. Just a suggestion. Hope it goes well for you!!

[jakekell]

I wish you the best also, spoke to a friend yesterday who has a different autoimmune disease that went to Ville-Forte. This friend loved her, in fact she finally had a name for her autoimmune. I see on this site many people use her so sounds positive. I was worried about the docs being faxed also so yesterday I called her office to verify they did get them. I was concerned as my Rhemy here (will be former) doesn't even respond to phone calls well. I also am picking up my old ct scan on cd from the hospital tro take.

I have fooled around with this rhemy long enough as she is really doing nothing, very slow on everything. Let me know how it goes hope we all get the best help out there we all need it for sure!

[Pete]

One of the unfortunate effects of GPA/Wegener's is aneurysms. These occur when blood vessels are blocked by clots or when they rupture as the blood vessel walls get too thin to contain blood and leak into surrounding tissue. This is one of the nuggets I gathered from a recent Vasculitis Foundation Webinar: VF Road Map to Wellness: Medications: The Good, the Bad, and the Ugly by Dr Kermani 7 22 14 - YouTube (http://www.youtube.com/watch?v=j46fXp_aMiU&feature=youtu.be)

[jakekell]

The Good, the Bad and the Ugly is a good title for anything to do with wg's. Thanks for the info on my situation now do I want to read more on it or hear what Ville-Forte has to say all this is scary as you know.

Mary

[Pete]

Hi Mary

I see Dr Villa Forte. She'll take very good care of you. Before you go see her, it would be good to write your case history (symptoms, dates of symptoms, medications, dates of appts with other docs, etc.) and a list of questions and concerns. Most of us on here who have seen her report that the first appt lasts 1-2 hours. She's very thorough. She's also a good and nice person.

Good luck and better health!

[jakekell]

Hi Pete,

I have heard from several members that the also see Ville-Forte. I am so glad to hear she is very nice (always helps). I think I will do the list of questions and concerns good idea. I did verify that she received my medical records and taking a cd of my old scans as no recent ones as the Rhemy here really has only done the blood work. I did try the RTX infusion, but bad reaction so had to stop. I am wondering what they will use next. I was on Mtx for 4 1/2 years and had infections so a little nervous what is next with the aneurysms. I guess no need to worry as I am already in trouble so will have to do what I have to do. I am so grateful for a God/husband/family that support me 100% so not going this alone and since I found this site, what a blessing I am learning so much and is getting me at last to a good Dr. I have had to many that I now realize weren't really qualified to handle this disease just thought they could. This form is a must for anyone with WG's learning all the time. I have had this a long time and wished I found all of you sooner.

Thanks for your help,

Mary

[jakekell]

I went to see Ville-Forte yesterday and loved her! Everyone was so right about her being so nice, caring etc. The good news is I have NO Aneurysms in my hands or otherwise just a rhemy in our small area that doesn't know what she is looking at. What I have are some type of Churg-Strauss nodules they are in my hands most likely soles of feet they have lesions on them so very painful.

I am have a flare up of the old weggies and going back on MTX beginning this next week. Dr. Ville-Forte told me it will me monitored closely and shouldn't have some of the issues we had last time I did this. I should have gone there a long time ago. I also have no issues with my kidneys so that is wonderful. I feel so good about finding all of the things I did and feel I will be well taken care of here or in FL. Dr. set me up test wise for both MI/FL she said not a problem where I am. Thanks for all the words of encouragement I have had about Ville-Forte she is great!

Mary