|
|
Post by grammie on Jan 25, 2012 12:14:17 GMT -5
Had an interesting Doctor's visit last week. As you know, I was thinking of dropping the mino by a pill per day starting last November. Having to change drugs for another "illness" my hubby and I decided to stick to the two a day since we knew it was working and didn't want to deal with too many changes at one time. No problem with Rhumy who rewrote the prescription.
However, I was at the "other doctor" this week and she was explaining the SD situation to a nurse practitioner and what the mino had done for me. She commented that it was wise to stick with what works. She said a new doctor who hadn't seen me before and only read the reports so should let the patient be in charge, particularly when the mino worked!
I just sat there smiling as she continued to comment on the good of mino!
Just thought I'd pass along some 'good news' from a medical doctor!
Grammie
|
|
|
|
Post by Cubby on Jan 25, 2012 17:02:41 GMT -5
THAT IS AWSOME!!!!!
|
|
|
|
Post by jeffn on Jan 25, 2012 20:25:11 GMT -5
That's great Grammie, sounds like that doc is sold. I would stick with that one! I notice a large difference in attitudes between those that have seen where I was and where I am compared to those that don't know me and just flat out say "oh no that can't work". It is gratifying to hear some positive reinforcement. I have a doc friend that I have known for many years who came out of an emergency room back round and now is the CMO of a very large multinational medical equipment manufacturer. I was talking to him one time about AP and I mentioned the resistance of the medical community toward AP. His reply was in the same vein as your doc - "whats to discuss it has worked for you". I also broached the reduce dosage subject and his take was why change what is working, it is just your new normal. I would like to try to reduce some but not too much, I don't want to go backwards.
I'm glad you had such a good day Grammie and I hope all is going well with the your "other" issues.
|
|
|
|
Post by isobelle44 on Jan 25, 2012 20:52:07 GMT -5
wow that is refreshing to hear both you and Jeffs doctors. Mine arent thrilled about the mino.
|
|
|
|
Post by grammie on Mar 17, 2012 18:11:49 GMT -5
Well, I went back to the rhumy and was pleased to hear her say that all looked very normal. We had a nice chat. I then told her I was thinking about changing to MGH where all my other medical stuff is. She was warm and cordial about it all.
Had appointment this week at MGH and the rhumy told me basically the same thing about my condition. Also both had commented on my skin color change do to the mino for a long time (3 years)....I'm dark and have purple spots and the nails are purple.
So my hubby and I have decided for me to try just one pill a day for the next six weeks and see what happens.
Interesting she said I'd be acky for about a week or so as I dropped the amount. She said that mino helps with joint pain as well as SD. Will be interesting............Anyway, I'm trying it.
grammie
|
|
|
|
Post by jeffn on Mar 18, 2012 10:05:13 GMT -5
Grammie - If I understand correctly you have found a Rheumy at MGH that is open to you continuing AP? or are they trying to wean you off mino totally? If you have found a rheumy open to AP where all the rest of your docs are that is wonderful. It should make things easier for you.
I'll send you a PM, I have a couple of questions.
|
|
|
|
Post by steve201 on Mar 18, 2012 20:34:57 GMT -5
congrats ....here's to your speedy recovery!!!
Steve
|
|
Melanie
Junior Member
It's Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived
Posts: 60
|
Post by Melanie on Apr 15, 2012 9:41:47 GMT -5
Has anyone gone from minocycline to doxycycline, and if so, why and how has that affected you? I recently had to change rheumy because my insurance would no longer cover my doctor. I wasn't pleased with the service or lack of help I was getting from my dr. anyway, so I decided to find a new rheumy. I did, and he seemed quite a bit more knowledgeable about Ssc than my old dr. He, however, took me off mino and put my on doxy to help my skin. He also took me off plaqunil and put me on penicilimine and methotrexate injections. That was a month ago, and I have regressed to the point of being short of breath, achy, hard, and stiff. I want to be patient and give the new drugs time to work, but am wondering if it's time they should be working by now. Anyone have any comments or similar experiences?
|
|
|
|
Post by jeffn on Apr 15, 2012 15:13:48 GMT -5
Sounds like you are going backwards Melanie. I have not been on any SD drug other than mino so my experieince is limited. I would say though that your drug change is not working well so far. Perhaps it would be wise to go back and have your doc tweak things some. At the very least let him know what is going on. I hate to see people lose ground particularly when they have been doing well.
|
|
|
|
Post by grammie on May 3, 2012 16:55:24 GMT -5
OOps, I see my new post should have gone here. To know how I;m making out (no wise cracks, Steve!!), jump over to my new post.
grammie
|
|
|
|
Post by grammie on May 29, 2012 8:43:16 GMT -5
I've posted an update on the other post, Sorry I messed this up.
Enjoying the day. Grammie
|
|
|
|
Post by grammie on Dec 28, 2012 15:44:35 GMT -5
Hello everyone, It has been about nine months of no mino and I seem to be doing well. The only issue I have is the raynauds is really active and I do have fingers and toes that 'lock' up with cramping ...... no lung problems, skin problems, weakness that I had originally. I have been told the cramping isn't SD related.
Going back in Feb and we will see!
Just wanted you all to know what has happened here. grammie
|
|
|
|
Post by grammie on Mar 18, 2013 19:45:25 GMT -5
I did go back and all is going well. The numbers for auto immune are now in the normal range!!! But still show signs of SD in the fingers not being straight---not arthritis he told me but SD side effects,---- and raynauds in the color of the fingers. All else seems to be good. See again in six months. Praying it stays that way!
grammie
|
|
|
|
Post by Cubby on Mar 21, 2013 15:09:35 GMT -5
Grammie: I am so happy for you! Everytime I tried to quit the AP, I have horrible burning in my hands and feet and start feeling sick all over! I am so happy you are doing well because your success, makes me want to try going off it again! Thanks for your updates!
|
|
|
|
Post by grammie on Sept 18, 2013 19:18:32 GMT -5
Hi there, Went to rhymie in August and still doing well....on no meds! Keep working on the exercises for the hands/fingers and it seems to be working. Doing knitting has really helped those fingers!
grammie
|
|
