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Post by jeffn on Sept 9, 2012 10:11:06 GMT -5
Well as some might remember I presently have no doctors. My Rheumy retired last spring and my local PCP jumped ship and left the island. The hospital has just brought in a new surgeon and a new PCP, they started last week. Tomorrow I have an appointment with the new PCP. I have no current problems so it will be kind of a meet and greet I think. I need to find out what she knows about SD and if she would be onboard with AP. I am curious about the visit. Bottom line I need a PCP locally, I can't get on the boat every time I need to see a doc. I'll let you know what happens....
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Post by nhnancy on Sept 10, 2012 11:38:03 GMT -5
good luck Jeff...My primary works ok with Dr. N at BI...lots of faxing gong on..
we really have to be pro active with all of this, kwim? and Dr. N @ BI doesn't seem to want me off AP so quickly now, as she has seen the improvement.
Nancy
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Post by jeffn on Sept 10, 2012 18:36:41 GMT -5
Yeah we do have to work and be proactive don't we Nancy.
The doc visit went well, she will continue me on mino and was concerned I had reduced dosage without consulting a rheumy. That was not expected on my part, a doc wanting me to continue mino rather than trying to talk me out of it. We had a good conversation and her only condition was that I have to find a rheumy so that is my next quest. She ordered some blood work and I'll go in for that Wed. morning - too much to do tomorrow.
Nancy do you and Grammie see the same doc at BI? How have you found Dr. N to be? Good news that she is getting to be more on board with AP for you. I have a list of AP docs in NE provided by RBF and I am going to ask over there for some reviews from folks that are seeing them. I may consider going back to BI based on Nancy's experience. I also may see if the rheumy I saw at MGH back when is still there, he was thorough but did not want to do AP. I liked him a lot other than that maybe I would give him another try where I have been on mino with a good result. Who knows - but now I have a PCP and just need a rheumy.
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Post by peggypansy on Sept 11, 2012 11:56:38 GMT -5
I always hate having to find new doctors. I know my rheumy will be retiring in the next few years and do not want to have to go across the river to find one in Iowa. Hopefully, I will continue to have minimal sclero problems and just work on the cancer thing!
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Post by kathsherman on Sept 11, 2012 13:16:48 GMT -5
so glad your doctor visit went well jeff!!!
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Post by isobelle44 on Sept 11, 2012 13:33:02 GMT -5
well that seemed to go really well. Hope your search for new rhumy is as successful.
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Post by nhnancy on Sept 11, 2012 19:39:51 GMT -5
Hi jeff, This October will be my third time seeing Dr. N at BI. She is slowly coming round. First time I saw her she wanted me to consider coming off AP, or at least cutting back. The last time I saw her she never mentioned it. Her words "Perhaps you are the exception to the rule"
I have the support of my primary, as I have been seeing her for like 18 years and she has seen a big improvement. She also has another patient on AP, and has seen improvement there too (IDK the patient)
Dr. N mentioned that my improvement may be the progression, as in some cases it does seem to back off at the three year mark. I said to her this past time, that what is going on outside is probably going on inside, also (softening) she agreed.
Dr. N is spot on with giving me homework, PFT, Echo, Blood. I had my tests done locally and faxed the results to her, she had no problems refilling my Mino.
I can really speak for grammie, I know she has seen her a couple of times but I am not sure if she still is.
Hope this helps. Nancy~
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Post by jeffn on Sept 12, 2012 19:03:07 GMT -5
Thanks for the heads up Nancy. I have not had any luck with my query over on RBF about Dr.s on the list. Maybe there are less of us SDers in New England than I thought. I did a little internet sleuthing and none of the docs on the list are rheumies anyway and my PCP wants a rheumy. So right now I am thinking either going back to BI and see Nancy's doc or the rheumy I saw at MGH.
Nancy I may drop you a PM to get some more info if that's OK. I have to dig into my file to see if I still have the BI contact info.
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Post by nhnancy on Sept 18, 2012 16:57:31 GMT -5
Nancy I may drop you a PM to get some more info if that's OK. I have to dig into my file to see if I still have the BI contact info. sure I will help in any way that I can!
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Post by Cubby on Oct 2, 2012 20:30:50 GMT -5
JEFF and everyone else having this problem--this makes me SICK! Here we are, all doing well on the AP and now that the doc has retired, you are having trouble getting a doc to give the prescription! I live in dreadful fear of the day my doc retires!
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Post by jeffn on Oct 4, 2012 17:14:29 GMT -5
I think it will all work out Cubby. I have some thoughts about what to do about a new rheumy but have not made any calls yet. I need to get on that. Surprisingly I am not too worked up about the whole thing. I'm thinking it will be ok. I am glad Dr. T did not retire a few years ago in the middle of all this. For anyone at the beginning of the road a Dr. change would be disconcerting to say the least.
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Post by grammie on Oct 4, 2012 19:22:16 GMT -5
Jeff. Glad it went well for you. I did switch to MGH and found a rhemy who would keep me on mino. However, due to another drug I was taking and the mino was 'upsetting the apple cart' I was taking it only three times a week. So when the subject came up, we---all 3 of us--- decided to give it a try and cut back. After several months, all three of us decided to give it a try and drop it. I've been off since April.
However, I got very ill with one or more unknown infections in August and spent nine days in the hospital. During that time I had many different specialists check me out. One team was from rhumy and it was most interesting where they saw the sd....in my fingernails and several joints! I've had zero trouble since being off mino so am pleased to have the opportunity to be off mino. and to get such a comprehensive evaluation for sd while in MGH. My skin has GREATLY improved.
The raynauds has been very 'pronounced' since August when I was so very sick. It is frustrating to say the least!!! It isn't even winter yet!!
Due to all the doctors and specialists, I canceled my appointment early Sept to reevaluate the sd. I need to recover from this ordeal first and figured if sd had produced its ugly head somewhere, it would have been picked up. They sure were looking at all areas to find the cause of my illness!
So that is where I stand on this subject. Remember, I was in my late 50's when sd appeared so I maybe one of those that it kind of disappears after three to five years. Who knows??
grammie
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Post by jeffn on Oct 7, 2012 8:14:48 GMT -5
Lots of stuff there Grammie you have been busy. Not the quiet summer around the lake like you hoped for I suppose.
Did they ever figure anything about the cause of the infections?
As to the SD just going away I have always been a bit skeptical of that theory. From my reading it seems like the folks that have spontaneous remission are still fighting SD issues just less of them and at a slower pace. Not a bad thing progress is progress. Any relief is great. Perhaps your meds finally controlled the SD. Whatever - it has worked for you so I am glad you are doing fine regardless of the cause.
What do they think is causing your uptick of Raynaud's? They have any ideas? Any new meds for that?
My reduction is going well so far. I dropped my evening dose to three days a week back on Jan. 1 and on Sept. 1 I dropped my evening dose entirely but am ready to begin again at the first sign of any uptick. I am watching my hands closely. So far so good. I REALLY don't want to deal with all that again.
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Post by grammie on Oct 11, 2012 18:03:33 GMT -5
Hi Jeff, Glad it is going well. No, no answers to either of your questions. The powerful antibiotics taken did correct the infection after several weeks. The raynaud's? no explanation except I lost a lot of weight and have no fat anyplace so get colder faster......does make sense. Can't take the drugs for my blood pressure would drop too low. So keeping warm!
Do hope you continue to 'be in remission' or whatever.....be comfortable!
grammie
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Post by jeffn on Oct 11, 2012 18:33:37 GMT -5
Stay warm there Grammie. The past couple of days here have been kind of raw and cold. Today cool but very nice, of course I spent the day working in a crawl space. Not much sun down there, hoping to spend tomorrow above ground. Nice work on getting rid of the pounds, good job! What type of program did you use? I can get back to the gym next week and I am looking forward to that.
I don't use the remission term yet although I do think it once in a while. For now I'll use your "whatever". I do feel well but time will tell - just taking things day by day.
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