temporal arteritis

[Kathy]

Harley2ride:
Sorry I did not answer. I got the information for him to fill out from Scripps Memorial and he filled it part way out and then threw it away so we are starting over again.

In Sept. we added to my husbands long list of supplements Vitamin C and Vitamin B5. His Sed rate dropped to 17 and his prednisone was dropped to 20 mg a day. The Nov. blood test showed his drop in Sed rate to 11. At that time his prednisone was dropped to 10 mg a day and the problems started. At first we thought he had the flu. He had muscle pains and aches, a fever, an upset stomach , loss of energy. We thought he was having a relapse---he was again walking with a cane and spending a lot of time on the sofa.

At this time I Googled "prednisone withdrawal"(something I should have done before we starting dropping the dosage) and came up with the information that after you reach the 20 mg figure any drop in the prednisone dosage should be gradual to give your adrenal glands a chance to resume natural cortisol production. Reducing too quickly can result in adrenal crisis or you can have a steroid withdrawal syndrome or rebound effect. The December Sed rate test was back up to 35. I think this was probably caused by the large decrease in the prednisone. The doctor has upped his dosage to 15 mg of prednisone at this time with another blood test scheduled in three weeks to see if we can get that Sed rate dropped back down to where it was last month. From now on we will follow the prednisone weaning process given in following web sites:

[http://arthritis.about.com/of/prednisone/f/withdrawaltaper.htm]

[http://sarcinfo.com/weaning.htm]

Despite this set back he is standing straighter, is joking a lot more, and said he actually feels better than he has felt in months. On a humorous note: I had my annual blood work done and when hubby was in the office for a check up they told him that I had serious health problems--my cholesterol was sky high! It hasn't changed in 40 years so I figure it must be normal for me.

The Chicago Tribune had an interesting article in it this week about "Does Google belong in your doctor's black bag?" A years worth of case records published in the New England Journal of Medicine, without looking at the correct diagnoses, were Googled. Google came up with information that enabled the doctors to make the correct diagnoses that matched the diagnoses in the Journal 58% of the time. Search engines can give us a lot of information and believe me from now on I will Google all further directives from the medical community.

We were very happy to see that Pfizer was shot down on their latest poison drug, torcetrapib. I think they should have to test these so called miracle drugs first on the CEO's and upper management of said drug companies before they ever do clinical trials on the general public. There are so many of us that have affected by these so called miracle drugs either thru our usage of them or a loved ones usage. What is really sad is the amount of people out there that don't know what is wrong with them.
Kathy

[sos_group_owner]

Re: "Does Google belong in your doctor's black bag?" A years worth of case records published in the New England Journal of Medicine, without looking at the correct diagnoses, were Googled. Google came up with information that enabled the doctors to make the correct diagnoses that matched the diagnoses in the Journal 58% of the time.

Would help a lot of people if doctors Googled 'statin side effects' or 'damage caused by statins' !!!

Fran

[Darrell]

I made the leg pain connection to my statin because I Googled "leg pain" and pretty quickly found a web page titled "Lipitor Leg Pain". If I hadn't done that, I probably would have gone to the emergency room and been tested for everything except statin damage.

I also later found Space Doc using Google. If it hadn't been for that (and that leading to Ray Holder), I might never have found L-Carnitine and the relief it provides.

Google is my friend. [As are Ray, Doc, Fran...]

[sos_group_owner]

Thank you Darrell... I've learned a lot from you also. Fran

[Kathy]

My better half just got the results back from this months blood test. We got a chuckle out of what the doctor wanted checked. This month it was the Sed rate as usual and lo and behold he had the oxidized LDL checked rather than the lipid panel. This was quite a switch. When I had ithe oxidized LDL checked no one seemed to know what it was. We had added cinnamon to his long list of supplements in September. It has taken 3 months to notice a difference but the oxidized LDL dropped from 147 to 120. We are pleased. Thank you Fran!

His Sed rate is hanging in there at 20 but he has so much more energy and is able to be alot more active since they started dropping the prednisone and we added the B5 and C vitamins to his long list of supplements. I suspect that some time the cure or coverup from the pharmacy contributes to some of the problems. Yesterday when we took down the outdoor Christmas decorations and he made several trips up and down the basement steps he had to take some extra L-Carintine and Q10 because of leg problems but thanks to Darrell, Ray, and so many others he knew what to do. He said to thank each and every one of you for the input on this web site. As bad as he was last March I am sure if it wasn't for all of you and your input to this web site he would not have made it thru the year.

I was on the polymyalgia rheumatica and temporal arteritis forum the other day and asked just out of curiosity how many were on or had been on statin drugs. I got two answers back. One said she had been on Zocor for about 4 years and her rheumatologist had her stop the drug for several weeks to rule out adverse affects. Because she still had problems the statins could not be the cause. The other one said her husband had been on statins and the adverse affects were muscle weakness which he did not have. They don't question the medical community at all---------

We sincerely hope that 2007 is better for all

Kathy

[sos_group_owner]

Great news Kathy! For B5 we use Pantethine instead of Pantothenic Acid. Good article that explains the difference:
[http://www.drlam.com/opinion/pantothenic_acid_and_pantethine.cfm]
Page down to: "LIPID PROFILE DYSFUNCTION"

Pantethine is not as easy to find as Pantothenic Acid... I order NOW Brand online from [http://thecatalog.com/] - good quality and great prices.

Fran

[crafty]

After reading the comments re temporal arteritis, I would like to recommend you-all read Living Right 4 Your Type by Dr. Peter Dadamo. This is the diet according to your blood type (BTD). It is a basically a diet for good health. Yes, I have statin caused polyneuropathy, living owner of 10 stents (7 medicated), hypothyroid, age 79 and despite aches and pains still very active. Neurologist tested and disgnosed the PN resulting in carpal tunnel surgery both hands; very beneficial. He then wished me good luck. So now I follow the blood type diet take, good Vit & Min daily, 25mg atenolol for blood pressure, !25 mg Levoxyl for hypothroid, & 75mg Plavix. By eliminating wheat, dairy, corn, & pork from my diet, I have seen a cleansing of my sinuses, fewer colds, & more energy. My health is very good, my PN is static and maybe getting better. Miss some of the foods I elected to give up but am well benefited by my good health. Suggest you get the book from the library and make your own evaluations.

[Kathy]

It has been two months since I last updated my hubby's progress. He has been in for a couple more blood tests. After dropping the prednisone dosage too quickly his SED rate mushroomed to 35 the 1st of Dec at which time they raised the dosage to 15 per day. The Dec. 26th blood test dropped to 20. In Jan. the SED rate went back up to 29 at which time they raised the dosage again to 20. The March 1st test was 30. In January we had traveled to our son's in Tucson and spent the month with him and his family. I think that the flare up might have been caused by a change in diet and over exertion on his part. Flare ups are a normal part of this particular immune system disease.

On the upside--He continues to be more active and seems to have more stamina as long as he sticks to a routine and takes his supplements on a regular schedule. I think that he is improving but will probably have to take all of these supplements forever. I for one, would much rather pay for the supplements than support the drug companies any more than necessary.
Kathy

[Kathy]

It has been a rocky couple of months! Hubby was going downhill fast and could hardly walk at all. When he leaned down to tie his shoes he gasped for breath and when he stood up he got extremely dizzy. We went into the doctor and requested a referral to the Mayo Clinic which made said Doctor very upset. We did get our referral and had his first appointment in May for preliminary tests. They found his hemoglobin was below the normal range-he was losing blood fast. (This was something that showed up on the April blood test which the doctor ignored because he was only fixated on cholesterol) Hubby went back in June and he was there for 4 days. They ran all kinds of tests and found that he had a bleeding ulcer. His bone density which had never been checked had dropped to low normal. They said he had lost about 5-6 pints of blood. I do think I almost lost my husband. They did give him a prescription for the ulcer but the surprise came when they had him get Citracal with Vit. D for the bone density. The Mayo doctor said it was just as good as anything they could give him a prescription for and a lot cheaper. The iron pill was also off the shelf. After about 2 weeks he is no longer dizzy and his color has returned. He still tires easily and probably will until he gets his blood built back up.

They also said that the prednisone that he was on caused the ulcer and likewise the bone loss. He is on a taper schedule to get him off the prednisone if possible. The really good news is that they added statin drugs to his list of allergies. They added another BPmed short term until they get the prednisone down. Also said he probably won't need them at all after he gets off the pred. They checked his cholesterol once. The total cholesterol (251) and the triglycerides (207) were high
his HDL was 69 and the LDL was 141. They said that the medication causes high numbers on the cholesterol. One of the doctors said that some doctors, the media, and the general population are to hung up on cholesterol. So far none of his organs show any damage.

Mayo clinic was a interesting experience. You were given a schedule when you arrived and for the most part there was very little waiting for your appointment. Everything was recorded on the computer and each doctor knew what all the other doctors had found and prescribed. About a week after we arrived home we got a complete copy of the records with all the results.

Today we meet our new doctor. I ask six different people who they had for a doctor and the same name kept popping up again and again. They said he does a lot of research on the computer and always refers the patients to specialists if he is not sure of something. We are looking forward to a better year.
Kathy

[Biologist]

Kathy,

Is your husband still taking cinnamon?

Biologist

[Kathy]

He is still on the cinnamon. I should remove cinnamon from his supplements? I remember some discussion on cinnamon but have not had time to investigate.
Kathy

[sos_group_owner]

Kathy wrote: They (Mayo) found his hemoglobin was below the normal range-he was losing blood fast. (This was something that showed up on the April blood test which the doctor ignored because he was only fixated on cholesterol)

Thank you for the update on your husband Kathy and glad he is starting to recover. Last year we changed doctors thinking the new one would be better than the last. New Dr seemed good at first. I explained in detail all of our concerns re: statins, muscle damage and cognitive issue and he seemed on board with our concerns.

Then hubby wrenched his shoulder and rib muscles. Went to the new Dr and his only concern was my husband's cholesterol. I told the Dr his inflammatory markers were excellent... he could only say, "Yes, but he must lower his cholesterol!" I said we weren't going down that road again and we were basically 'dismissed' (again).

Definitely go in with an open mind and I hope you've found one of the few Dr's that aren't statin crazy. We're still looking.

Fran

[Biologist]

"He is still on the cinnamon. I should remove cinnamon
from his supplements? I remember some discussion on
cinnamon but have not had time to investigate."
--Kathy

Kathy,

The way I see it there are two issues/questions to be answered. Here they are:

1) Is cinnamon a statin?

2) Are small doses of statin advisable?

Here's my best judgment on the two issues currently:

1) Yes, the evidence shows that cinnamon is an HMG CoA Reductase Inhibitor and therefore it is a statin. Ounce for ounce, it is not as refined and/or as potent as pharmaceutical forms.

2) No, I have no interest in taking any statin in any amount for any reason -- particularly since I had, and still have, serious health problems from having taken statin drugs. Doing so again, for me, amounts to a "re-challenge" with the drug which anecdotal evidence (found on this forum) shows is particularly inadvisable. However, more generally, since the risks most likely exceed any potential benefits for most anyone -- not just those previously injured by statins -- the issue is mute. In short, I consider statins worse than worthless since the same purported benefits in question appear to be attainable much more safely via alternative means.

My doctor suggested a lower dose of statins. I said no thanks.

Fran, I am interested in your opinion on the two issues.

Thanks,

Biologist

[Kathy]

Thanks to both of you. The new doctor said his Mom is elderly and started to complain of aches and pains after she was put on statins. He said he had her get off of them pronto. I mentioned that Mayo had put statins on his list of allergies. He ask if I had had problems with statins. I told him that I didn't believe in messing around with my cholesterol. It has been basically the same for ever and it was going to remain that way without any help from the drug companies. Guess from what he said that I am not the only one with that attitude.
Kathy

[Kathy]

It is now September and hubby is slowly returning to some semblance of his former self.

We had an interesting summer. They had put him on a second BP med because of the high pulse rate. They said it would be short term which it was. About a month after they started the second PB med he announced he was going to bed and would I please bring in the water . I followed him in with the water and he was laying on the bed with his eyes open wide and glazed over. His pulse rate had dropped and he had passed out. He scared the "----" out of me! We hauled him off to the hospital and they checked him for a stroke and kept him for about 4 hours and then sent him home. Needless to say, he is no longer on that medication and has had no incidents like that since. He is slowly building up his hemoglobin and his energy level is increasing with each passing day. He is also regaining some of his strength. The Mayo doctor wants him to eat a diet with plenty of red meats until he gets the hemoglobin back up to where it should be. Just what most every male wants to hear.

He was down to 15 mg of prednisone when he went back to Mayo this month for his check up and was given the ok to slowly taper to 10 in the 3 months before his next appointment. He has started to lose some of his stomach (he only looks 8 months along instead of way past due) and his character lines are beginning to show up in his face. He is not so ravenously hungry anymore.

We learned a couple of interesting things at Mayo this time.
1. They check the BP in both arms and if they are different it generally means that you have inflamation in the large blood vessels from the aorta to the arms.

2. They also said that as long as the Sed rate remains below 50 there is no damage to the eyes. This was good news to us. It meant that several times the local ex doctor had raised the prednisone dosage when it was not needed.

3. An abcessed tooth can raise the Sed rate. (It was one very expensive tooth)

Hubby's arms were so bruised and purple from the prednisone. He could scrape the skin off tucking in his shirt. I had read about "Ave" a fermented wheat germ supplement that was discovered in Hungary and that they have had lots of sucess treating cancer patients and also people with immune diseases. We sent for some in April and he has been taking it ever since. It took about six weeks for the purple to fade and his arms to look better. Ave is sold as a supplement here in the States-the FDA has not approved it.

The new Doctor is working out just fine so far. He listens and does not dictate. The only problem we have had is they tend to sit on the results from the blood work for longer than we would like but we have circumvented the problem by going to the lab and getting a copy.

Kathy

[Kathy]

Hubby just got back from Mayo yesterday where he had his three month check up. They did the blood work and then we met with the doctor later in the day. The results were very positive His hemoglobin has increased to 11.5, up from 10.5 the previous months. Normal is 13.5 to 17.5 g/dL. His iron levels has also increased. The platelet count has dropped well down into the normal range and best of all the Sed rate has dropped from 30 in September to 20 this month which puts it in the normal range. His BP and pulse has returned to the normal range and he is hoping that when his blood supply is back to normal that the need for the BP meds will disappear.
He does not have to go back until June for his next check up unless the monthly blood work shows some problem. At that time they will do a test to check his aorta for potential problems that might have been caused by the long term usage of prednisone. Because he is having problems with a sore lower back they did an xray of the spine to make sure that he did not have spinal problems from the prednisone usage.
He also had a second abcessed tooth this fall. (If he has any more I think we will be paupers!) After they did the root canal and gave him some antibiotics his Sed rate went down considerably. Because he had several of the markers for mercury toxicity Mayo did a heavy metal test on him. It did come back negative but the red rash he had under his arms for months has disappeared since the root canals were done; likewise the dry eyes and the dry mouth.
He has lowered the prednisone to 9 mg per day and the next few months he is to continue lowering it until his blood work shows a problem or the pain returns. He is lowering the pred 1/2 mg every two weeks. With each decrease in pred he has about three drowsy, crabby days before his mood levels out and his energy increases. They also told him that when he gets to the point where the pain has increased to unbearable to increase the pred up just 2 mg. With this decrease in pred has come a loss of 6 inches around his waist and he says shaving has become much more hazarous since the character lines have returned to his face. He is also beginning to lose some weight.
Because of the large amount of supplements he has been taking he decided to cut back on them and see which ones he could lower the dosage on or just take every other day. He had no loss of energy or problems cutting back on any of them except the Q10 and carnitine. He tried to take them every other day and he reverted to having to use the cane almost instantly. Q10 and carnitine will be a daily supplement forever.
This has been a year where our road has been full of bumps. Hopefully, next year the road will be a lot less bumpy for all of us. Thanks to all of you who have posted on this forum and given us so much help.
Here is wishing every one a Merry Christmas and a Happy, healthy, New Year!
Dick and Kathy

[Kate]

I did not realize that I hadn't updated this for a full year. Hubby did well until after January of last year when he started losing blood again. The local doctor sent him back to Mayo to have that ulcer checked out. The ulcer was healed and after several tests including swallowing the camera they could not find where he was bleeding from. I ask about the aspirin he had been taking daily for years and was told that it wasn't large enough to cause any problems. When he got home he stopped taking that baby aspirin and his bleeding ceased. When he went back the next month the rheumatologist said that the aspirin can cause internal bleeding in some people even in small doses. He has also dropped some of his supplements.

He has done fairly well since then until this past November when he decided he was going to shoot in an archery league. After the second session he had to get the crutches back out. He was in so much pain that I think he has finally given up on the archery. After Thanksgiving he decided to give acupuncture a try. It seems to have helped him recover from the muscle aches and pains. He is moving alot smoother and is sleeping better.

He had also developed a toxicity to the prednisone and has been on a schedule to lower the pred to under 5mg. It took almost the whole year to lower to 4.5 mg's and then he had to increase again in November back up to 5.5mg's because of the pain he was having. He is now down again to 5mg's a day.

Hubby also had another abcessed tooth. When it started to bother him we stuck a tea bag in next to the tooth. It seems to draw out the infection and he hasn't had any problems since.

We know that the statin drugs seems to affect everyone differently has any one else on this forum had problems with polymyalgia rheumatica or temporal arteritis caused by taking statin drugs?

Kathy