temporal arteritis

[Kathy]

Subject: Polymyalgia Rheumatica and temporal arteritis
Your article in this months newsletter really rang a bell. I think I had written you previously about my husband's bout with the statin drugs and how he went to the post office and had a hard time finding his way back home. It was a trip of 5 whole blocks. Needless to say, despite the Doctor's pleading he immediately stopped taking the statins. Well, this summer (about 6-7 years later) he started to have muscle cramps and would end up walking with a cane. This fall his head started to itch really bad, was extremely tender, and he couldn't stand to wear his glasses because his ears were so tender. They did a Sed rate test and his sedimentation rate was 98. He was immediately put on the standard 60 mg of prednisone. They also did the biopsy of the arteries above his ears and confirmed that he had temporal arteritis. After six weeks on 60 mg his Sed rate dropped back down to 1 but the side effects of the prednisone were disasterous. He started falling down for no reason, he had trouble maintaining his body weight, he ate everything he could get his hands on, he was not able to sleep and last but not least was the cramping in his hands and legs. I was not aware that one's fingers would bend in so many different directions at one time. Also his blood pressure skyrocketed.
They had to drop the prednisone back to 20 mg a day. Sed rate went back up to 51. Side effects subsided. They upped the prednisone to 30 mg, Sed rate dropped back to 17 where we are today. They are remaining at 30 for another month and then they will hopefully try to drop the dosage some more.
I have read everything I can get my hands on as far as Polymyalgia Rheumatica and temporal arteritis are concerned. I have found no information as to what might be the cause until I received your newsletter today and other than using prednisone to treat it and a discription of the disease there is nothing. We have been flying blind. Not being able to find any information I have concluded that if one's immune system attacks the body the immune system is lacking something. (not too scientific but made sense to me) Therefore we eat all fresh foods, over the counter meats with no sodium added, and nothing with the corn syrup fructose in it if we can help it. We are also taking some special vitamins. He is looking better and is not tiring so easily. After the first week food with no sodium added begin to taste good and has a flavor of its own. We also use very little sugar and no sugar substitutes.
When we were in Arizona this winter to see our son we brought back oodles of oranges and grapefruits. When they checked his cholesterol last month the bad cholesterol had dropped 20 points. All without those darn statin drugs.
My husband will be 70 in May and has been on no medications whatever until he did the Statins. It is really difficult for him to go from someone who felt, looked, and acted like 55 to a tired 70 year old.
Kathy Anthony

[Kathy]

An update--
My husband has been in for blood tests every month and his SED rate continues to hang in there between 17 and 25.(Normal is 1-10) He is still on 30 mg of prednisone; his face is puffy and his tummy looks like he is about 8 months pregnant. This is a side effect of the prednisone. Dr. Graveline had suggested we use as much CoQ10 as we could afford which we did and he felt a little better. After reading the letters to the forum we added the L-carnitine which has helped tremendously. His hair which hadn't needed cut for three months started growing and the texture changed from feeling like a bristle brush back to the soft healthy head of hair of a year or so ago. Also he had to clip his nails for the first time since last October. He is able to go outside and work for longer periods of time between rests. This is a big improvement from March when he got up in the morning, ate, showered, and then fell asleep on the sofa until lunch. Every day I see a more positive change in his stamina and thru all of this he has always remained upbeat.

His blood pressure had sky rocketed since he was diagnosed with temporal arteritis and his pulse rate soared to 100 and above. They put him on bp meds and it brought the bp down but not the pulse rate. He has been on the L-carintine about 2 months at this time and his pb has dropped along with his pulse rate which is back into the 70 to 90 range.

We have also changed our diet and have gone back to whole milk, cheese, eggs, and red meats along with the fish and chicken. We eat lots of raw veggies, fresh fruits, and nothing with ingredients in it that is not natural. We find that we are eating less because we aren't craving something and are losing weight. Our cholesterol level which was never way out of line has not changed.

Our doctor is like most a strong believer in the Statin drugs but he will listen when we bring up the various things we have tried and the results we achieved. He did admit that some people like my husband just can not take the statin drugs.

We would like to extend our thanks to Dr. Graveline for this site and to all the people who contribute to it and let others know what is or isn't working for them. We have benefited greatly! I never imagined I would spend my retirement researching medicine and nutrition!
Kathy

[sos_group_owner]

Hi Kathy,

Thank you so much for sharing your husband's history with statin AE's. It's such a great learning tool for others so they don't get sucked down the same dreary path. "Flying blind" explains our situation also until we found Dr Graveline and his first book, "Lipitor - Thief of Memory". My husband was experiencing TGA (transient global amnesia), but before reading Dr Graveline's book, I thought hubby was in the early stages of Alzheimer's. All of our doctors thought (and probably still think) he was too. We fired them all and started to fly blind... it's pretty darn scarey.

Your last statement: "I never imagined I would spend my retirement researching medicine and nutrition!" WOW, does that ring true. That's what I've been doing for the past 2 years, that and managing a statin support group of almost 300 now.

I'm glad all your hard work is paying off and that your husband is improving. Your husband is lucky to have such a resourceful wife.

Fran

[Kathy]

We tried to get hubby into the Mayo clinic this past month. We were told that the neurology department was backed up four to six months. Also told that that this was the only department that had a back up. Doesn't this ring a bell with anyone? I wonder how many of these people have been on statin drugs? (Hubby calls them Satan's drugs) Needless to say he was turned down because he was too healthy! Excuse me, I live with the guy and healthy he is not. They never even looked at him or had a doctor talk to him.

He had a lipid panel done last month along with the ESR (Sed rate). The Sed rate is hanging in there between 20 and 30 which no one seems to be to concerned with but us. It would be nice if we could get him on a lower dosage of prednisone. The side effects of the prednisone are awful. If he bumps his arms the skin will peel off and he is a bloody mess.

They are concerned with the lipid panel. His numbers are
Total cholesteral 262
HDL 64
LDL 164
Triglycerides 170
VLDL 34

They have scheduled him for another lipid panel next month along with the ESR plus anything else that we would like to have tested. I wish they would stop hounding us about his cholesterol because we consider it is fine just the way it is.

In June we had the CK-total taken and it was 40 IU/L
C-Reactive protein was 1.8 MG/L

Does anyone have any suggestions as to what else to check?
Kathy

[sos_group_owner]

Hi Kathy,

Have they checked your husband's homocysteine?
Most labe say 11+ is OK, but optimal levels of homocysteine should be around 6. For every 3 points above 6 there is a 35% increased risk of heart attack.

Lp(a) - Lipoproteine (a)?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
HDL 64 - Excellent

LDL 164 - (ask the Dr to check for "oxidized LDL")

Triglycerides 170 -
(cut back on carbs - especially the white foods)
(And try cinnamon - available in 500mg capsules - start with one)

VLDL 34 (this is nothing more than triglycerides divided by 5)

Fran

[Kathy]

Thanks Fran. We will have the homocysteine, Lp(a), and check for oxidized LDL. Will also start him on the cinnamon.
Kathy

[bunnylady]

My doctor only put me on it for 6 days- then he tried 10 days- symptoms come back as soon as I stop the prednisone- I find that 20 mg stops all pain- I get down to 10mg and headaches and diarrhea return

what kind of doctor prescribed it? is he a specialist?

HELP

[Kathy]

Our local GP recognized the problem and sent him to the specialist to have the biopsy done and confirm the diagnosis. We were lucky in that our doctor's father had had the same thing and realized what my husband had. It is normal procedure with temporal arteritis to start the patient off with 60 mg of prednisone per day and then when the infection rate drops to taper off on the prednisone gradually until a point is reached where a lower dosage of prednisone will keep the infection with in the 0-10 range. If one is lucky they might only have to be on prednisone for a year or two. Some people are on it for life. My husband's Sed rate dropped but the side effects were so bad that they dropped the dosage back quite a bit. He has been at 30 mg of prednisone a day for months.

I have just received the book by Thomas E. Levy "Stop America's #1 Killer!" and found it very interesting reading. A lot of food for thought!

Besides the 30 mg of prednisone a day my husband takes a multi-vitamin, large doses of L-Carnitine and CoQ10, fish oil, B12, Vitamin E, and we have added vitamin C at 2000 mg and cinnamon. This last week he has started to feel almost human. Also the lumps in his arms have disappeared and his fingers have started to cramp which is hopefully a positive sign that they will be able to drop back on the prednisone. Really curious if the Vitamin C has helped that much. I will post his results when we get them in a couple of weeks.

The statin drugs seem to some extent to affect everyone just a little bit differently. Is it possible that the lack of CoQ10 and L-Carnitine has eliminated or slowed the removal of the toxins from the body causing the immune system to go haywire?
Kathy

[sos_group_owner]

Hi Kathy,

Steroids do reduce inflammation but the downside is numerous side effects, especially with long term use. I did come across a natural alternative to prednisone: a combination of pantethine & pantothenic acid. Pantethine is an important precursor to coenzyme A and is derived from pantothenic acid (B5).

Excerpt from article by Dr Lam: "People who are taking steroids such as prednisone for treating health conditions such as asthma and autoimmune disease should reduce their medication dosage. With the help of pantothenic acid, they can be slowly wean off their dependency on anti-inflammatory drugs."
[url]http://www.drlam.com/opinion/pantothenic_acid_and_pantethine.cfm[/url]

Page down to "Adrenal Function Enhancement" There is a chart at the link above with the doses required for different conditions.

An additional side benefit of pantethine: raises HDL cholesterol (improving LDL/HDL ratio), lowers triglycerides, helps with "brain fog" & short term memory.

Kathy, I'm curious about your reference to "infection rate"... do you mean "inflammation rate"? Temporal Arteritis (as I understand) is an inflammatory condition affecting the medium-sized blood vessels that supply the head, eyes, and optic nerves. Was this an adverse reaction to one of the statin drugs?

Another anti-inflammatory to explore is: serrapeptase

Fran

[bunnylady]

Fran- the link you referred to is down - at least on my computer- there is 5.5mg of vitamin B5 in my B complex vitamins- is that enough?

P

[Kathy]

Sorry Fran,
I meant inflammation not infection. Thanks for the information on the alternative for prednisone. I will check into it.
Kathy

[sos_group_owner]

Hi BunnyLady,

Re: Fran- the link you referred to is down - at least on my computer- there is 5.5mg of vitamin B5 in my B complex vitamins- is that enough?

The B5 in B Complex is pantothenic acid; The adult RDA (recommended daily allowance) is 5 mg, but the optimal (normal dose) is 100 mg. Therapeutic doses are much higher. Pantethine is not as easy to find in places like drug stores. I've even had trouble finding it in some health food stores, so I order it online "TheCatalog.com" (NOW FOODS brand) as we both take pantethine now... It really helps my "brain fog".

I tried the link just now and it's OK.
[url]http://www.drlam.com/opinion/pantothenic_acid_and_pantethine.cfm[/url]

Make sure you only copy the link and eliminate "[url]" at each end of the link.

Fran

[Kathy]

Fran,
We just got the results back from my husband's Oct. test.
The Total Cholesterol was 247 down from 262 in Aug.
HDL was 62 down from 64
LDL was 135 down from 164
Triglycerides were 248 up from 170

The triglycerides have bounced back and forth since the records I have for 2003 and the present time from 147 to a high of 248. I understand that this can be caused by medication? I am going to request a copy of all back Lipid profiles so we can compare them.

We also had the following tested:
Homocysteine which was 12.1 listed on their chart as normal but less than 10 was listed as desirable.

Lipoprotein A was 2
High sensitive C-reactive protein was .8

I also had the BUN and Creatinine tested which hadn't been tested since 2003.
BUN was at 22 up from 15
Creatinine was at 1.1 up from 1.0

After starting him on the Vitamin C we added the Vitamin B5. The results were awesome. His Sed rate dropped to 18 and the Doctor suggested that he go on 20 MG of prednisone a day which we have done.

Since we added the B5 and Vitamin C to all of the other pills he is taking he has been a changed person. He still paces himself but he does not require the nap in the afternoon and his mind is much sharper than it was.

We have never been able to prove that the Statin drugs were the cause of his problems but he has benefited from the same treatments as everyone else. As I think I have stated before he was never on any other meds before the Statins and comes from a long lived family.

Oh yes--the doctor's parting comment was "Don't you think it is time to go back on Lipitor?" Ha!

Kathy

[Kathy]

Fran,
I meant to add that we had the oxidized LDL checked. He had trouble at the lab because the nurse taking the blood didn't know what it was. She had to call the head office. The results were high at 147.

I sometimes think our area of the country is really behind times as far as medicine is concerned.
Kathy

[sos_group_owner]

Hi Kathy,

The Total Cholesterol was 247 down from 262 in Aug...
HDL was 62 down from 64 (still very good)
LDL was 135 down from 164 (more important that oxidized LDL goes down)
Triglycerides were 248 up from 170 (not good)
Re: I understand that this can be caused by medication?
Yes, Prednisone can aggravate diabetes, glaucoma, and high blood pressure, and often increases cholesterol and triglyceride levels in the blood.

Have you tried adding cinnamon to his regime?
Cinnamon (C. cassia) is available in 500 mg capsules. Take one to three capsules daily and really watch his carbohydrate intake, especially the white foods.

Re: Homocysteine which was 12.1 listed on their chart as normal but less than 10 was listed as desirable.

Optimal homocysteine levels should be 6.2 or less. For every 3 points above 6.3 there is a 35% increased risk of heart attack. Elevated homocysteine is one of the causes of "oxidized" LDL.

Really good article by Dr Malcolm Kendrick: "Is Heart Disease All Due to Blood Clots?"
[url]http://www.thincs.org/Malcolm.htm#clots[/url]

Excerpt:
Things that create free radicals and oxidized LDL...
* Smoking
* High blood sugar levels (diabetes)
* Stress

Risk factors that damage the endothelium include elevated levels of:
* Homocysteine
* Blood sugar
* Insulin
* Cortisol (stress hormones)
* Triglycerides
Also smoking & deficiency in some vitamins, such as C and the B's.

Re: Oh yes--the doctor's parting comment was "Don't you think it is time to go back on Lipitor?" Ha!

They never give up! My Mother-in-Law is 81 and her Dr continues to bug her about her cholesterol. Really ticks me off!

Fran

[Kathy]

Fran,
We have started him on cinnamon but I don't think he had been on it long enough to make a difference on the blood test.

He does not smoke
I have had the same 5 lbs. of sugar in the cupboard for months. He uses Stevia as a sweetner in his coffee once in a while.
We do not eat much pasta, white bread or white potatoes. We eat lots of fresh fruits, and veggies. Small portions of meat.

As far as stress goes-the only thing besides his present health situation could possibly be the after effects of putting our neighborhood back together again after an April tornado. Just about done. Sure puts a new insight into what the hurricane victims go thru!

Thanks for the help.
Kathy

[sos_group_owner]

Hi Kathy,

You are definitely on the right track. Doctors want quick results but our bodies go at their own pace.

Re: We have started him on cinnamon but I don't think he had been on it long enough to make a difference on the blood test.
This is our experience with cinnamon: My husband ate high carb, so that was a big change for him. Once we restricted carbs and added 2 - 500 mg capsules of cinnamon daily, he reduced his triglycerides from 301 to 150 in 3 months. The doctor still wanted him to lower his LDL, even though his HDL was coming up and all inflammatory markers were excellent.

Fran

[Kathy]

Fran,

We just got the results back from hubby's latest blood test. His Sed rate has dropped down to 11 this month from last months 17. Almost back to normal. He has been on the B5 (Pantethine) and Vitamin C for about 2 months along with the other vitamins he is taking. His face is beginning to lose its Chucky the Chipmunk look and some of his 70 year old character lines are returning. Hopefully his tummy will disappear a little bit also.

I had to go in for a check up this week and the Doctor tried his best to get me to go a Statin drug. Did not get very far with that. I did have them give me copies of all back lab reports since 1995. I have done a chart mapping the changes in the Cholesterol, etc. Very interesting!

Kathy

[sos_group_owner]

Hi Kathy,

Keeping a 'Medical Diary' is essential today including copies of ALL test results. Some time ago I also charted my husband's cholesterol levels for about the past 10 years, starting around the time he had a quad bypass at age 52. I was shocked when I noticed his LDL cholesterol was in the 80's & 90's before statins and CABG. His problem areas were 'triglycerides' (over 300) and low LDL, primarily due to a high carb, low fat diet. Couple of years ago he cut his trigs in 1/2 in 3 months by cutting way back on carbs (especially the white foods) and taking one 500mg cinnamon capsule daily. We've been avoiding doctors lately so not sure what his HDL is lately, but I suspect it's gone up since adding saturated fat (virgin coconut oil & butter) to our diet. Pantethine also helps to raise HDL levels.

Fran

[harley2ride]

Dr. Paul Phillips at Scripps Memorial in San Diego, CA, is a doctor who isn't afraid to tell you if the statins are hurting you, and access your damage. And my current doctor is working on converting Dr. Singleton in Salt Lake as well. My current doctor is Dr. Friedman with the Idaho Elks Rehab (he is a MDA doctor). He strongly believes that the statins did this to me.