I started Simvastatin one month ago and have reacted positive to the cholesterollevels of LDL but have musclepain. I am not sure it is the

[Lure2]

statin. The doctors seem to think it is a treatment of APS/Lupus. I also have warfarin. What is your opinion to this new drug? Thank you!

Kerstin

[Salty]

Muscle aches and pains--that is the number one side effect/toxicity of statins. You should have your muscle enzymes CPK and aldolase tested, or simply stop the statin and see if your muscle aches go away. normal muscle enzymes do not rule out statin muscle toxicity but if they are positive then you will know for sure it is the statin especially if the levels normalize some time after you stop it. most patients with muscle pain from statins will have normal muscle enzyme levels. It can take up to several months to go away but usually goes away pretty quickly. The muscle toxicity that occurs with statins can be severe and occasionally even fatal (though usually it is mild and quickly reversible). Seems odd that your provider would think it is anything other than the statin since this side effect is very well known and you just started the statin one month ago. It usually occurs within the first 6 months of treatment. Some people with muscle symptoms,from one statin will tolerate another one, others don't, it is just trial and error.

[Lure2 in reply to Salty]

Hi Salty,

I tested P-CK (Kreatinkinas) and it was OK. My doctor said I could stop and see if it goes away but i do not think I have enough pain and therefore I asked for your opinion. Thanks for answer!

Kerstin

[CanaryDiamond10]

Hi Lure2: I was on Simvistatin (Zocor) for many years. During those years I had severe muscle pain to the point that it crippled me to a wheel chair. It seemed all my long muscles were pulling away from the bone. Then, I found this Hughes Syndrome site. An administrator named, Paddy, posted an article (one of many he has) which noted the side effects of Simvistatin (or most statins for that matter). I began to take CoQ10. I have been taking it for over six months and muscle pain is noticeably down. I take 400 mg./day natural, no colors or preservatives etc. Pretty expensive, and not covered by insurance because it is not acknowledged as a drug. Look in the archives of this Forum. Put Simvistatin in the search box. It should pop up with many a separate conversation both pro and con about it.

All I can tell you is I was highly skeptical, as I am by nature, and it worked for me. It's rather like it removed an overall layer of specific muscle pain. There is still pain, but nothing like when I was on Simvistatin. I intend to continue as I'm not quite sure I have received the full benefit of CoQ10. I have received some benefit certainly. My doctor changed my statin recipe to achieve the same thing.

Do your research on the HSF site. Print off a few pieces you feel are pertinent. Ones that convinced you one way or the other and discuss it with the prescribing doctor. There are many, many different statins out there and he may find you react better to a different combination.

Warm wishes to you,

CanaryDiamond10

[Lure2 in reply to CanaryDiamond10]

Thank you Canary Diamond 10,

Did you stop Simvastatin and changed to another statin before you tried CoQ10?

Kerstin

[CanaryDiamond10 in reply to Lure2]

When I first went on simvistatin, it was the result of an accidental find after a stroke. Had the stroke at age 48, they gave me the "once over" for 10 day inpatient stay. I mean the once over. I had every single test at least once. Finally they concluded I had Central Nervous System (CNS) Vasculitis. Mine was in the occipital area of the brain. The cure was massive steroids (80 mg/day over a year), many other meds, finally chemo and that "rendered it acquiescent (quiet)". They knew something else was out of order and continued the search.

Ultimately, they determined I was at high risk for stroke, and put me on Zocor which is a brand of simvistatin. The years went by, the cramping of my muscles became worse and worse. I was finally diagnosed with APS around 2010/11. Yada, yada, yada. Ups and downs came and went and just recently we have had an opportunity to try a new recipe. Crestor and Amlodipine Besyate (Norvasc). About a month or two after I weaned off Simvistatin I tried CoQ10 So far the LDL is right where they want it. But the no such luck with the other one. So they are still working on it.

Muscle aches and pains ARE A VERY WELL KNOWN side effect of statins to the medical community and I, also wonder about your doctor. Tell him you want a different statin. Print out the statin article I gave APSnot above. (Sorry, it is the only one I can find right now, but I will continue to look for you) Are you in the States or UK? I wouldn't hesitate to write Paddy directly and ask him. He really knows his stuff when it comes to statins and I believe he would be receptive to you.

First look under administrators. Find Paddy. (Not too many with that name) Click on him and then send a private message. I'm actually surprised he hasn't popped in here already. I'm so sorry you have had such a terrible time with the changes on the Forum. They should have asked the users for input before implementing such vast changes.

Good luck. Remember, the doctor works for YOU. You are paying him for his educated opinion. No more, no less. So politely ask for a different statin and tell him you believe Simvistatin is causing cramps.

Please remember, I am just a patient like yourself. I don't know the whys and wherefores of these meds. If you feel you want more specifics call your local pharmacist and ask him to explain it in layman's terms specific to YOUR case.

Warm wishes, Lure2.

Canary

[Lure2 in reply to CanaryDiamond10]

Hi Canary Diamond 10,

Thank you so much for your reply.

I am from Sweden. I have one of the best (perhaps the best) reumatolog in Sweden. Not so many here but I live in Stockholm. She also knows a lot of SLE. What I understand from your reply your musclepain did not get better when you changed statin. I think the doctors believe they have found a new drug that works against APS/SLE. But what I have read it is yet experimental.

I know we have read about statins before on this forum but I can not find it. I have not so much pain and if it gets worse I will absolutely change to Crestor or something else.

I also take warfarin and I have Lupus anticoagulant and high levels of the other 3.

Take care and Thank you

Kerstin

[Lure2 in reply to CanaryDiamond10]

Hi Canary Diamond 10,

Thank you so much for your reply.

I am from Sweden. I have one of the best (perhaps the best) reumatolog in Sweden. Not so many here but I live in Stockholm. She also knows a lot of SLE. What I understand from your reply your musclepain did not get better when you changed statin. I think the doctors believe they have found a new drug that works against APS/SLE. But what I have read it is yet experimental.

I know we have read about statins before on this forum but I can not find it. I have not so much pain and if it gets worse I will absolutely change to Crestor or something else.

I also take warfarin and I have Lupus anticoagulant and high levels of the other 3.

Take care and Thank you

Kerstin

[CanaryDiamond10 in reply to Lure2]

Just below you will see an answer from me directed to Apsnot: Note the blue pathway. Click on it. It will take you to specific literature on statins and muscle pain. I tried it and it works fine. If not, cut and paste the pathway I will leave below this and put it in your own browser.

newsmaxhealth.com/Dr-Browns...

I have also taken the liberty to send a private message to Paddy and ask him to help you with information on statins. He's very knowledgeable and has quite a library on writings re statins.

No, I still don't think I communicated right. I really don't know if it was the CoQ10 that stopped the muscle pain or the new mix of cholesterol meds that no longer caused pain or maybe both or neither. I should have done them separately to know that I think. But to tell you the truth, I'm just grateful this is working for right now. I really dislike being immobile or worse an unexpected cramp that causes a fall. I haven't had one that bad since I went off simvistatin. Hope this clarify s a little. I will check my resources now for more info on statins.

Smiles,

Canary

[CanaryDiamond10]

Dear Apsnot:

So sorry for above double post. Delete away, by all means. Trouble seeing and hit the wrong thing. I saved some info from Paddy, because sometimes I have to read these things a few times to fully digest them. Also, I wouldn't hesitate to ask Paddy for his file on statins. He was pleased to share his information before.

newsmaxhealth.com/Dr-Browns...

I thought I saved more, but I may have just printed it off when Paddy was posting it. I can't find it now. It could be there and I just can't see it right now. Well this should help Lure2 a little and if you would be so kind as to ask Paddy for the rest of his statin file I'm sure he would be cooperative.

Yes, the site is NOTICEABLY ineffective. So are the frustrations of the patients looking for help and administrators trying to teach them how to find it for themselves as well as providing the resources for just that. Where are the archives from before the change of sites? Who is the liaison with HSF re the Forum? So much valuable information. I can pass along my list of resources if you like. But you pretty much use what I use. Medscape Plus, etc. But say the word and I'd be pleased to copy & paste & send if it is useful to you for now.

I don't know about you, but (I realize I date myself here) when computers first came out the hardest thing to do was trust the machine and don't create paper. This is why I STILL keep a hard copy of anything I put time into writing.

You have every reason to be upset, I certainly would be upset. Particularly, because the site has new patients all the time (this month alone!) These patients often ask the same inevitable questions and most of them would be answered in the archives, if they could get to them easily. I am very surprised they did not ask for the administrators input before making the changes. After all, they are the ones with the hours and hours and hours of donated time trying to help raise funds, etc for HSF while taking care of their own illnesses. A little consideration was certainly due. But the frustration is showing and that's not professional nor a positive experience for the patient nor the administrator nor HSF. The purpose of the site is to inform new patients, and raise awareness and research funds. To have one place a patient could go for all that plus the emotional companionship so many need and find at the site. The goal is not being achieved as well as it was before.

Frankly, it is much less user friendly, and I'm sorry you have had all this frustration. You should take a break from it so you can give yourself the attention you need now. Get away if you can. The site will do whatever the site will do without you. And if it falls apart, HSF might look before leaping next time. I'm sure your time could easily be donated to Fibromyalgia organizations as you have said you have experience there. Take a long bubble bath with a cup of chammomile and a little Nora Jones. Worry about it tomorrow~ it will get better and best of all..... this too, shall pass.

Smiles and a really big hug for you. I can't imagine the hours you have put in lately.

Warm wishes,

Canary XX

[Lure2]

Hi APsnotFab,

I have read your frustration! have you tried to find your info on other Health unlocked Communities? I was "double" (hope you understand my English now) with "Braininjury" and I could read my replies there. I clicked to out of that because Hughes was under and obviosly I had two memberships.

When I clicked on "Braininjury" all my membership disappeared. I had to start up again with a new Username (Lure2) and a new password. It took some time with the help of Lora..

What I mean is that perhaps your info is to find on the other communities. I guess this does not help you but it was just a thought.

Thank you and stay on!

Kerstin

[MaryF Administrator]

Well APsnotFab - this sums up what I think of the current site format and endless teething problems! youtube.com/watch?v=VT2llVy...(Not working as expected?)

Mary F x

[Manofmendip]

Hi

I had severe muscle pains with various statins.

I was referred to a lipids consultant who, as it turned out, was one of my clients and had also treated me for pneumonia in 1980.

Anyway, he explained the reason for the muscle pains and how to overcome them, as follows: Most statins enter the blood stream as the total dose but are only taken up by the liver gradually during the day and so a large part of them hangs around in the blood stream causing side effects. He put me on Fluvastatin 80mg (Prolongued Release), which gradually release the dose at about the same rate that the liver takes it up so, for me, no more muscle pains.

I hope this is helpful and I am happy for you to show this to your GP.

Best wishes.

Dave

[Lure2 in reply to Manofmendip]

Hi,

I will absolutely tell my Rheumatolog this.

Thank you so much Dave.

I am so happy,

Kerstin

[Manofmendip in reply to Lure2]

Good luck Kerstin.

Dave x

[Lure2 in reply to Manofmendip]

Hi Dave,

This medicine is not available in Sweden. I am going to talk to my Rheumatolog on Wednesday about this. Anyway not so much pain. Kreatinkinas was ok.

I must say that I have not had so much pain with APS. Lucky me. Thanks Dave!

Kerstin