down to 10 mg pred shoulder stiffness and pain return

[arvine]

i have been down to 10 mg pred now for about 6 weeks now, didn,t notice in beginning of decrease but over last few weeks seems left shoulder stiff and hurting for hrs late afternoon before relief, sometimes stays that way all day into night, when i was first diagnosed last oct, on 40, was both shoulders, then seemed just right shoulder after number of months, but stiffness and pain would almost disappear after 2-3 hrs of taking pred. I don,t know if it,s because i end up sleeping on my left side, as i am also having issues with right hip , apparently from chronic lower back issues,see my rheumy on tues this week, and plan was to continue decrease if bloodwork was ok, had blood done about july 6, and seems it was ok, she never callled me to say otherwise, and since i am under more stress, son diagnosed june 20 with multiple myeloma, i am reluctant to decrease any more at this time, so don,t know if pred is keeping pmr inflamation under control, or not, many days, body hurts all over, stiff and sore, or if arthritis etc, i am 69 yrs old, also get to see results of my bloodwork, wbc still high t 14, although dr says pred does that, also neutrophils high, not sure what that actually means, althoughgoing to ask her this week when i see her

[DorsetLady PMRGCAuk volunteer]

Hi,

Would say a combination of what else you have going on, your level of a Pred is not enough at this particular time - stress is always likely to increase your situation.

If has taken a few weeks to become a problem, then your previous dose was probably just keeping it under control, but you've now gone below your optimum dose.

Personally I certainly wouldn't decrease any more, and would be more inclined to increase by a mg or 2 to try and get things back under control before it becomes any worse.

If you're seeing Rheumy next week then suggest that's the way forward. You certainly shouldn't be reducing if you have a return of symptoms.

[arvine in reply to DorsetLady]

thank you

[yourpharmacist]

Hello Arvine- so sorry to hear of your added stress- Something that you might want to consider is to see where your fit D levels are and how well your thyroid is functioning. Vitamin D levels being low have been associated with fibromyalgia. It is amazing when you raise the vitamin D has that helps with the pain, at least it did for me. My doctor who is an integrative doctor suggested I take Magnesium as well with vitamin b12. These are things that will not hurt and if they help it is a win. please see my posts about the pain I had when I was reducing my prednisone-

[arvine in reply to yourpharmacist]

well i am taking 2000 untits vit D 3 each day, never said anything to me about magnesium, though,

[yourpharmacist]

Arvine, I am not surprised as many doctors do not think much about supplements. I have heard the comment"you are just making expensive urine by taking all those supplements and vitamins" but that is not really true. My primary doctor is an integrative physician and so she is very intone with the chemistry behind the supplements.

Magnesium is a very important supplement as it is responsible for many functions such as the co-factor to over 300 enzymatic reactions in our bodies. It inhibits platelet aggregation like aspirin, it is necessary for nerve transmission, involved in cardiac vascular relaxation. Magnesium might be more important than Calcium with regard to good bone health as it is involved in Vitamin D synthesis, claim metabolism and needed for the integrity of the bones. It has been found that as many as 85 % of people with Diabetes have low levels of magnesium. If you are on any prescription medications there are a number of meds that cause a depletion of magnesium to occur. Prednisone is one, a number of drugs to treat high blood pressure, some antibiotics and furosemide to name a few.

I take a product called Slow Mag- it used to be a prescription item but it now is available over the counter. I no longer have the muscle cramping and it is a natural sleep inducer which is always helpful.

[Marilyn1959 in reply to yourpharmacist]

Hi Yourpharmacist. I read your reply with interest. I have one remaining PMR symptom that seems to be getting worse rather than better regardless of pred levels, and am currently alternating between 15mgs and 12.5mgs daily. This symptom is a muscle spasm just right, off centre, below shoulder blade. If Magnesium helps with muscle spasms I may consider trying your suggestion of Slow Mag. Do the usual blood tests show magnesium levels? If so the doctor hasn't mentioned this. I do not have diabetes. If regular blood tests we PMR sufferers have do not measure Magnesium levels, should I ask for Magnesium levels to be 'tested' before I start Slow Mag, so that I have a baseline marker against which to measure any impact of Magnesium supplements?

One final question - do you know of a deficiency that may cause constant tingling in hands and feet without causing any pain?

Many thanks.

[yourpharmacist in reply to Marilyn1959]

Hello Marilyn, monitoring your blood work is a great way to have a base line nut it is not necessary prior to starting to take the magnesium. I monitor Vitamin D, TSH, Hemoglobin, Alkaline Phosphatase- this is important for people with GCA as it is usually high and that was one of the markers that my doctor keyed into. Magnesium levels are not usually part of standard labs but it is not a bad idea to ask for it. Some times a level in the blood is not representative of the availability of the element to the cells. There are a number of reasons that can cause tingling in extremities such as Epstein Barr virus, infection from bacteria, nerve damage from an injury and even some medications, so working with your Doctor to eliminate causes is important. Vitamins that help with nerve function might be something to consider such as Vitamin E, B1, B6, B12 and niacin. Pernicious Anemia which can be caused by B12 deficiency can cause tingling in feet and hands. Vitamin D has been helpful in relieving the pain associated with Fibromyalgia so that is another option to look into. I had tingling in my hands and arms when I first was weaned off of the prednisone hard to determine if it was that process, or Inflammation resolving or the need to supplement. If all of the above turn out to be negative exposure to toxins and heavy metals is another place to investigate. A very important point is to make sure you know where your supplements are coming from and to make sure they are standardized. A doctor friend of mine was taking Omega capsules , getting healthy, running and after 3 months started to get very sick. He is an infectious disease doctor and nobody could figure out what was happening to him. He finally figured it out, he had mercury poisoning from the supplements he bought at a discount store and the product was shipped from China. I hope this is helpful please keep me posted. Thank you for your comments and questions.

Ps. my name is Linda-

[Lochy in reply to yourpharmacist]

Good to know your name Linda! Another fascinating post. I used to get tingling in arms before my PMR diagnosis but it has disappeared but I assume higher doses of Pred make most things disappear and lots of different things appear hence you are never quite sure what your original symptoms ever were. My Magnesium is 0.89 mmol/l which is classified as optimal but then others say a lot of the modern guidelines are out of date. Is there a problem with taking too much magnesium?

I currently take Vit C, D, Omegas 3,6 and 9 and a probiotic. I also have my home made kefir every morning with berries just trying to improve my gut biome. I'll try anything in the hope my body can wean more quickly off the pred and naturally suppress this inflammatory condition.

I have a super health store locally where most of the supplements are organic - expensive but also get good advice so worth it to me at the moment.

[yourpharmacist in reply to Lochy]

Hello, 400 mg is considered the upper limit for daily intake so I would imagine you are in that range. The RDA that was established was the minimum amount required to ward off defiecencies, not the best to keep our bodies functioning at their optimal .

Great to have access to a trusted source for supplements, very hard to find. The vitamins you are taking are great and keeping the omegas in balance is huge.

My doctor encouraged the use of vit b12 so i got the sublingual to pop all day long.The hardest thing for me to deal with is keeping calm and not stressing. I purchased a cd by Dr Lam on breathing to help the adrenals recover. Breathing techniques to reduce stress decrease bp . When performed properly you actually can feel a sense of calm and that translates to better healing.

I try to be mindful of my breathing easier said then done. This disease is such a learning experience and making peopke aware of this silent disease is crucial. Thank you for responding , look forward to this support.

[Marilyn1959 in reply to yourpharmacist]

Hi Yourpharmacist. Thanks for such a comprehensive response Linda. Since GP, Rheumy and Stroke Consultant haven't seemed bothered about tingling in hands and feet (but I am) I am pursuing what this may be with Doc now outside of PMR. Doc is going to conduct neurology tests at my next appointment in September to look at whether something is going on re nerve endings. B12 has been checked and ok. I don't think it is a result of any meds as I wasn't taking any at the time of onset. Do you know how Epstein Barr virus and / or infection from bacteria would be diagnosed? Many thanks for sharing your knowledge. It helps so much in preparing the right questions for appointments with Physicians.

Meanwhile I will order Slow mag to see if this helps with back of shoulder muscle spasm.

Many thanks.

[yourpharmacist in reply to Marilyn1959]

Thank you for your kind words. You probably know this already so forgive me if you do, Epstein Barr Virus is also known as human herpes virus 4, and Mononucleosis. The Virus can lay dormant or inactive in your system after being exposed and can become reactivated by a trigger, decreased immune system etc. There are a number of tests that can be done and depending on the timing of your exposure will display a positive result.

There is VCA- which is viral capsid antigen- Anti-VCA IgM which will appear early on in the infection and will disappear after 4-6 weeks. Anti-VCA IgG which will peak in 2-4 weeks and remain in system for life time. EA- Anti EAIgG- which will appear during an active infection and then disappear but 20% of people have shown to have in the system for years.There is also EBNA which will not appear in early phase of infection but will be present after for life time of person.

Most people will show exposure to the EBV at some time in their life. If antibodies to both VCA and EBNA are found it is assumed you have been infected and it could have happened years ago. What I think is so interesting is that so many of the "syndromes" and diseases we discuss have been around for years and we know them today with different names than in the past. When you start digging into the history of how and when these diseases and drugs were identified you can see how the dots get connected. The "why" and "how" is what keeps me up at night. I hope this helps. Just something to think about- my first crazy symptom was smelling cigarette smoke and no one was smoking around me. Last night I was with a Gastro Doctor and his wife suffers from herpes outbreaks and their two daughters both have Lupus. When she experiences the smell of cigarette smoke she then has a herpes outbreak. Keep me posted on your results.Thank you

[arvine in reply to yourpharmacist]

well thank you, i am in ontario canada, where would i be able to purchase this slow mag, and be assured it is safe

[yourpharmacist in reply to arvine]

Amazon has slow-mag- and walmart, cvs, walgreens also supply if you can order over the internet? If you cannot get I can ship to you from our pharmacy-let me know-If you have a pharmacist in your town they might be able to order for you too.

[arvine in reply to yourpharmacist]

ok thank you