CALLING JAN~~~~~~

[barbaranoela]

Greetings Jan---sorry if I missed seeing U enter so a very big to the family!!!

Nooo---Yoga is out----due to the problem I am having with my shoulder ---PT said I did more harm to it whilst I continued ---at that point I thought it was just getting the body backinto the moves and so forth--and I luve doing YOGA!!!! so I do things that dont require megga pressure on the arm---
had I known my shoulder was hurting from a *problem* I would have stopped---

I can do certain moves where ALL pressure is NOT put onto the shoulder but they are sorta far and between--so I am careful~~~~

Many years ago I DID have a frozen shoulder due to another fall down stairs and boy that was horrid--the PT --then-- told me if I didnt break the lock (my wording) they would take me into the hospital--break my arm and RESET it---and if U think I didnt work getting it movable -- --anyHOO these were another bunch of nit-wits (brothers) that I had gone to---never again---I called them the BOBSEY BROTHERS!!

My newer PT is Frank ---he and his staff (including his wife) are awesome---its almost like a party going there--cus Frank luves *music* and he plays the best music----
One almost feels like *to heck with the Xercizing -lemme get out there and boogie along --

The music is almost like therapy too---cus one just *works* along without watching the clock to see how much time *groan* do I have here!!!

I luve this PT place---and he GETS U back into shape---

Monday will be my last day---see the orthopedic next week--another Xray and if he deem it better for more treatment than I shall be boppin back to Frank
I went back to Ti Chi --that helps to slow down my inner stress but it dont stop my OUTTA stress from verballizing~~
The xercizers I do every day (for my shoulder) are done with some rock and roll music playing --makes it FEEL like fun time!!! !!like one is adding NEW DANCE steps--

Hope to chat with U more Jan---and trust your issues will get better---and being here re-assures improvement-- cant go wrong with this *family*


Barbara

PSS. boy do I feel terrible---I see U have been here for awhile---please forgive me for *slightly* forgetting!!

[Jan]

I haven't been very active for a couple of months. We left Texas to head East for graduations of nephew and niece in Virginia. It was strange leaving the drought of Texas and seeing flooding all along the way. Our nephew's college graduation was held indoors at the last minute due to a downpour. It was really funny seeing everyone looking like something the cat drug in.

The second graduation wasn't for 3 weeks so we headed to Georgia and the Carolinas to see things that we hadn't explored.

All in all it was a great trip. The down side was we came home to record heat. Makes me wish we would have just kept on moving.

I have finally come to some conclusions about my issues. My rhemutologist pointed out that he thought my problems were due to taking statins for my cholesterol. My GP, in looking at the latest blood work and listening to me grumble about muscle pain and weakness finally said "Okay, go off of them for a while and see how you feel". I've been trying to tell them this for a number of years. I finally feel like dancing in the street!

I found on this trip that I didn't have any issues with eating anything except lettuce. I put bread and other veggies in with no problems. Can't figure out why lettuce is my problem but if I can eat everything now but it I can live with this.

Anyway, enough about what's been going on with me. I used to do yoga and know how much better it made me feel. I can understand why you miss it. I haven't really tried Tai Chi. The little town I live doesn't have that and only has a yoga class once a week.

I hope you get enough PT so you get fixed up good. Sometimes I think they push us through too fast when we really need more time to heal.

Jan

[Gloria]

Hi Jan,

My rhemutologist pointed out that he thought my problems were due to taking statins for my cholesterol.

I'll be very interested in how you fare after being off the statins. I've been taking Vytorin for a few years. I've never given the medication much thought. Why does your rheumatologist think they are a problem?

Gloria

[Jan]

Gloria,

As you know, there are no tests for fibromyalgia so that diagnosis (as well as chronic fatigue) are a trial and error. I've been on two meds for muscle pain with some, but not significant, success. My cardiologist changed me from Vytorin to Crestor last year. She thought it would provide better protection. Also, according to her, Crestor is less likely to have significant side effects. I have been complaining about statin side effects for a number of years through a number of different brands. I became very sun sentitive after never having problems. That one was to the point that sun screen did nothing to protect me from burning. Regarding the muscles I had complained about them not feeling as strong as I thought they used to be and some minor discomfort. Well, with the Crestor it went to spasms, cramps and weakness to the point that I was stumbling while walking. Also, I found my arms couldn't lift much over 5 lbs. When I went back for a followup with my rheumo. and we talked about increasing the Lyrica he said he really felt this might be a statin issue.

I had a follow up with my GP a couple of weeks after this with blood work for cholesterol followup. Although this didn't show any problems with the CK results, I had a little higher liver enzymes (just over normal) and my triglycerides were the highest they have ever been. We discussed my muscle issue and he recommended that I go off the statin for 2 weeks, see if there was any improvement, and then go back on the statins for 2 weeks to see if things got worse again. It was like day and night. I felt wonderful within 10 days off the statins. As I started back, after 6 days I was cramping and aching so bad at night I couldn't sleep. I told my DH that with us starting on our trip that I wasn't going to be in pain, so I totally quit them, advised both Drs. and have been walking and climbing like I did 10 years ago.

I have appointments with the rheumo. and GP after the 4th. We'll see what they say. The cardio. is waiting to see what my blood works looks like then before we decide what we're going to do.

Hope this helps.

Jan

[JLH]

Dr. Sidney Wolf of Public Citizen would totally disagree with your doc about Crestor. He has tried to get it off the market. I just let my subscription to Worst Pills lapse but there was so much negative about Crestor that I had my brother get my Mom off of it.

My girlfriend's doc has her on it even though it has a 75 times more risk of kidney damage than other statins and she was quite near dialysis a while back. :-(

http://www.worstpills.org/results.cfm?d ... 5&x=17&y=5

[JLH]

Google "rhabdomyolysis".......

[tex]

Joan,

Thanks a million for posting that information. "Rhabdomyolysis" is a word that I have been needing, (and I wasn't even aware that I needed it).

I have a friend, (my brother's BIL), who had a stroke at the age of 39, and he's now in his 50s. Ever since his stroke, his doctors have been pouring the statins to him, even though his cholesterol has been lower than normal, for some time, now. A few months ago, he thought he was having another stroke, but the doctors couldn't find any evidence on the scans. After it happened a few more times, they decided that he was having seizures. (If I recall correctly, he's taking more than one statin, and all sorts of other high-powered drugs, to boot). Do you think that they told him to stop using the statins? Nope, they prescribed an anti-seizure medication, in addition to all the drugs that he's already taking. When it didn't do the trick, they increased the dose. They even consulted with an "über-expert", who agreed that the treatment should work. Are those guys hard-headed, or what? Talk about a one-track mind. They're so sure that they know what they're doing, that they just ignore obvious signs to the contrary.

He's weak, stiff, shaky, etc., and I remember him mentioning that his urine was dark. I'll just bet that his doctors have never even checked for serum myoglobin.

I knew damn well there was something basically wrong with his treatment, and I had asked him about the statins previously - (I didn't think that he needed to be taking them any longer), but it never dawned on me that they were probably the root of the problem. Thanks for posting that.

Tex

[Jan]

Joan,

Thanks for posting that. Since I have appointments coming up I'm taking this with me to the Dr.

Jan

[Gayle]

Interesting discussion re: statins drugs here.

I used Niacin for many years for elevated cholesterol. My ratio’s were always good, Triglycerides not bad, but Total Cholesterol numbers were always on the “higher than the Doc’s like” side.

My Doc wanted me to take a statin instead of the Niacin, so after several years of resisting I finally relented and was started on Simvistatin.

All “numbers” on my chart (the lipid profile) became PERFECT with the Simvistatin, but I also developed generalized aching as Jan describes here.

This generalized type body aching in association with these drugs is pretty well known, and to my way of thinking those numbers that look so good on my chart were probably also associated with my increasing generalized aching.

What good are pretty numbers on the chart anyway when you are feeling like crap? What are we trying to do here anyway, and at what cost? So I suggested I would like to cease taking these drugs. My Doc said “Well, first why don’t you try taking ½ the prescribed dose (of Simvistatin) and see what happens.”

I found that just reducing the dose by ½ did make a big improvement in the aching department --- and ALSO what do you know --- 6 months later, the chart numbers remained the same (excellent) on the ½ dose!!!!

At my request, I have recently changed to another statin because Simivstatin is found on a list of “suspicious” drugs for patients with MC. It is interesting that this one statin seems to be the only statin that appears on that list, in spite of the fact that so many people take various statins today.

Bottom line --- We have to pay attention and advocate for ourselves. Numbers on a Chart don’t always tell the whole story.



Gayle

[tex]

In the "good old days", doctors used to be forced to treat patients, so they actually had to think about what they were doing, since they didn't have many tests to go by. Now, there are tests for "everything", and doctors don't even have to think about interpreting the results, (the "normal" ranges are right there on the test reports, and the reports even point out above or below normal test results). Consequently, they no longer have to "think" at all, so they end up treating the lab test numbers, instead of treating patients. Doctors who don't think, could easily be replaced by a computer.

You are so right - if the doctors are not "thinking" about our health and welfare, then we had better take over that responsibility, ourselves, and at the very least, keep an eye on 'em.

Tex

[Gayle]

Oh my Yes, it is often said that Veterinarians make better diagnostitions than their human physician counterparts because they have to OBSERVE --- and then progress over an animal in an orderly fashion, system by system.

And oh yes, as our animals can't talk, a Veterinarian doesn't have to sort through a lot of verbal jargon and rif-raf to get to the point. Vets increasingly use the lab and imaging tools, but not with as much frequency because there is an out of pocket $$$ cost associated with all those tests right up front, which at least in my case, they have always fully disclosed and discussed before progressing.

IMHO --- There are good aspects, as well as bad aspects, to the Evidence Based Medicine our Physicians all learn to practice in their training, and do practice because of the Tort Laws in our country.



Cheers,
Gayle

[JLH]

Where is that list?

I had a lot of cramping in my feet and hands from Lipitor. My fingers glued together when I was trying to use a curling iron. I still have some toe cramping with Pravachol. My doc wanted to raise my dose recently and I just said NO.

We are going to get pet insurance for our new dog. We've never had it before and had healthy pets. I think I'm going with Embrace because it gets a 9.09 on a pet insurance review site.

[Gayle]

Hi Joan,

RE: ??A LIST of suspicious medications in relationship to MC??

I ran across this list a few months ago. So sorry, but right now I can’t locate it.

When I saw this list it immediately went on my list of questions for the next Doctor’s visit. This Doctor (Gastro at Mayo) had not been aware of this, but he immediately leaned over to his keyboard - did a quick search - and indeed came up with this list of medications thought to be somewhat suspicious in MC patients. And yes -- There was Simvistatin on this list.

His did not know why that particular statin alone would have made such a list -- or whether it was of great significance or not. However, his advise was that, in light of this, I might ask my regular Physician to consider changing statins for me.

Incidentally, I was then switched to Pravacol. Reasoning given for this choice was that it “works differently” than the Simvistatin. So I guess we both now have an opportunity to see what this different statin brings.

If I run across this LIST again, I will certainly post it here for everyone to see.

RE: Animal health insurance? This might not be he best place to get into the pros and cons of that issue. It is a thorny issue, and I may hold a rather skewed view as my breed has historically been relatively long living and healthy. I do appreciate that Vets have to make a very serious cost/benifit analysis for the owner when it comes to ordering diagnostics.



Gayle

[JLH]

Thanks, I do hope you find that list. I guess I can Google, too.

[Gayle]

Joan,

OK, I have located the source of the list of medications implicated in MC that I was referring to in a recent post.

That information comes from a print out I have which was given for purpose of patient education/information following a diagnosis of CC.

It is from an on-line source called Up-to-Date®, which is a web-site for health professionals. It is available only to subscribers, which is why my Physician could access it quickly while I was in the Clinic.

Titled simply “Lymphocitic and collagenous colitis (Microscopic colitis)”. The Author of this review of MC was Christoph F. Dietrich M.D. I believe (but am not entirely sure) he is located in Germany. This article was last up-dated in October 2008.

Among drugs he listed as having a “high likelihood” of acting as triggers in MC were lansoprazole (Trade: Prevacid) and NSAIDS. Simvastatin was listed as having an “intermediate likelihood” of association with MC.

This author suggested “that medications he found to be implicated in MC be either discontinued or substituted for”.

I bet you can have your Physician’s office pull this up and discuss it with you. It’s an interesting review for anyone with MC.

It took me a while to remember where this information came from. The exact origin of this recalled stuff percolated up from some recessed place in memory during the night last night -- as seems to be common for me these days. Ugh!



Gayle