PMR...and B12 supplements

Bones, joints and muscles
1

I have PMR and am starting my 6th year of prednisone.  Occasionally I see articles about B12, and late this fall I finally took notice and did some googling about it. I came across a good article by the Mayo Clinic (google Mayo Clinic news B12 supplements recommended for older adults) and when I saw that they have a recommendation for this I did a lot more online searching. 

B12 has a long list of symptoms so you need to read about it and sort out if this is for you. It reminds me of prednisone with its 80-ish symptoms....but that no one gets them all. 

I found that most reputable sites say the same thing so I began taking B12. For the first few weeks I had a significant decrease in my fatigue, I am still sleeping more soundly and my periodic muscle twitches have stopped.  (My fatigue has returned because of other things going on but I am hopeful that I can resolve them soon. )

B12 deficiency is common as we get older because our digestive system stops absorbing it. To solve this you need to take a sublingual B12 so it gets absorbed under your tongue. 

There are some contraindications for taking B12 so be sure your medicines are not on that list.....checking with your doctor/pharmacist would be good. 

There are also medications that cause a B12 deficiency (for example PPIs) as they reduce B12 absorption. 

Another significant point from my reading, and confirmed by my GP...the general B12 blood test they give is not accurate and should not be relied on....so be careful if you have this test and it says you are ok.  My GP says they go by indicators in other blood tests (and no, I don’t know what he meant by that).  From my online reading it appears there are new tests to check B12 but my GP didn’t say he would order any for me. At that time I was going to try B12 pills anyway so I wasn’t too bothered by his non-specific response. 

Anyway I just wanted to mention the B12 deficiency issue in case it would help any of you with symptoms. 😊

 

2

Hi Mrs CJ

I am B12 deficient because i take metformin for type 2 diabetes which blocks B12 absorption and as we age over 55 yrs our intrinsic factor a protein in our gut declines because our paletial cells in our gut that produces intrinsic factor diminishes and it is these two together that aids absorption of B12 through the gut and ileum into our system...so with metformin and age it's a double wammy for B12 deficiency! very low deficiency can lead to dementia. However i do have 3 monthly injections and their are also B12 patches you can buy online from A.....n. The other indicators that your doc mentioned are iron and haemaglobin levels..but these are not good indicators of B12 deficiency..for the elderly B12 should be between 500-900.....so if the test shows 200-300 they say this ok... but it's not for the elderly as you mentioned....thanks for the info on sublingual B12 i didn't know about those...my very best wishes to you Mrs CJ....

3

I have a B12 deficiency and can't absorb it from the foods I eat as I lack the intrinsic factor so I get an injection every 3 months.

4

What an excellent, helpful and informative response! To throw in my two grams-worth, I used to own a health food store. Mrs CJ is right about sublingual B12. More potent doses, also to be ingested sublingually, can be found in the form of oil. But B12 is difficult to absorb, so the sublingual method is by far the best.

5

I have chronic pain and fatigue and GP knows I'm deficient in vitamins but hasn't suggested I take any. I came off prednisolone in November but due to see rheumatologist soon because GP now admits he may have taken me off too soon. I'm wary of taking more drugs because I'm on enough but wondering if the b12 is safe to just buy over the counter

6

Hi porgi

Yes it is safe...but get your B12 levels checked first..if you are over 55 your intrinsic factor may have declined and B12 tabs won't absorb..You need to have a B12 deficiency test and if lower than 500-900 which are normal levels for the elderly and you are over 55yrs of age you should qualify for 3 monthly injections at your surgery. If you are deficient and doc wont give 3 monthly injections you can get the sublingual under the tongue tabs that abdorb straight into the blood stream from phsrmacy or patches(online not in pharmacies i don't think) or a B12 spray....hope this help porgi..my best wishes to you...

7

I suggest that you read about B12 and if you think it would be something to try for a few months (the mayo clinic article says you should see improvements within a few weeks or months)....... then check with your pharmacist for drug interactions. 

You should also check with your doctor of course,  but if yours is like mine he doesn’t think most supplements are very useful. 

B12 is a very common supplement and lots are on the vitamin shelves. Just be sure you get a sublingual one....if you decide to try it. 

8

Thank you for adding the more detailed description of intrinsic factor, etc. This is included in lots of my googling reading but I didn’t go back and look them up for my initial posting. 

I would be interested in hearing if you notice a difference from taking the sublingual pills vs the injections. It could be that you need to stay with the injections....and I think  I read that the injections are a different form of the B12 chemical. 

Most B12 sublinguals here come in 1,000 mcg and is called Methylcobalamin. 

9

Hi Mrs CJ

Yes that's right..the B12 sublinguals, sprays and patches are Methycobalamin. The B12 is Hydroxycobalamin which is the end product once the Methylcobalamin passes through the ileum. In other words Methylcobalamin coverts into Hydroxycobalamin.

The B12 injections (hydroxycobalamin)work on your deficiency quicker than than Methylcobalamin and are more beneficial. I will continue with the injections because they are more efficient. However, the B12 injection starts to wear off approx 2-3 weeks before the end of 3 months so would use sublinguals until injection is due.

B12 is water soluble and leaves the system via urination this is why we cannot overdose on B12. I have found a sublingual that has 2500mcg of Methycobalamin so i shall be sending for them....hope this helps..best wishes Mrs CJ....

10

Yes, B-12  1,000 mcg has helped me for strength during the holidays.

11

Hi Lilian I've checked that I'm okay to take vitb12sublingual but have come across two types. One contains cyanocobalamin the other type methycobalamim. Is one type better than the other. Both get good reviews and by Solgar

12

Re vitb12sublingual unthinkable my first reply has upset moderator so I'll try again. I've checked and I'm okay to take but I can get two types, one is cyanocobalamin the other methycobalamim, is one type better than the other?

13

Can you tell me if cyanocobalamin are better than the methycobalamim please as I want to start taking and can get either

14

Hi Lilian I've ordered the sublingual tablets now. I checked with the pharmacist and its safe for me to have them. However I'm wondering what to do about this and can't find my original postings so thought I'd put it here and hope people can make further suggestions.

Several replied to me when I posted about being worried Id been taken of prednisolone too soon, suggesting  I print out the Bristol paper about coming off prednisolone too quickly. Well I did that and enclosed the Paper with a letter asking to be referred back to the rheumatologist. My husband signed it as well and I copied both my children into it, one is a nurse, and both had spoken to  the GP about the pain I'm in. We then both emailed it to him and sent a hard copy, then my husband came with me to my next appointment. The GP said having been  through the paper had already referred me back to the rheumatologist. He then asked if he could get the thoughts of another GP in the practice and I agreed to him going through my notes with one I'd never seen, who'd never seen me about PMR and therefore could be unbiased. Well earlier this afternoon I went to the post box and found a letter from the GP saying my inflammation and viscosity markers are normal therefore he's written to the rheumatologist 'Asking for his thoughts on the matter'. In fact he's got mixed up because what we did do was just discuss getting the thoughts of the other GP. We didn't discuss the rheumatologist because he said he'd already referred me. I'm furious now because I've been expecting to get an appointment with the Rheumatologist and now it seems I may not. In the letter the GP infers that because my markers are normal there's nothing wrong with me and doesn't believe I'm in terrible pain. Any suggestions as to what I should now do would be appreciated. It seems this man doesn't make notes or use a Dictaphone immediately he's seen me and yet I'm always his last appointment for the day. What should I do now? All suggestions welcome 

 

15

Lordy - can't these GP use google? I despair sometimes, I really do!

Google "normal acute phase reaction in polymyalgia rheumatica". Amongst other links you will get this:

https://www.ncbi.nlm.nih.gov/pubmed/10948758

which says "The current diagnostic criteria include as a requirement an erythrocyte sedimentation rate (ESR) higher than 30 or 40 mm/1 hr. Nevertheless, in several reports, a sizable proportion of patients with PMR, from 7% up to 22%, had an ESR that was either normal or slightly increased at the time of diagnosis, supporting the notion that an increased ESR should not be an absolute requirement for its diagnosis."

This info for professionals, on this site:

https://patient.info/doctor/polymyalgia-rheumatica-pro

says "PMR can be diagnosed with a normal ESR and/or CRP if there is a classic clinical picture and response to steroids. These patients should be referred for specialist assessment."

Right at the top, under "Scholarly articles for normal acute phase reactants in PMR" are usually 3 links, two by Salvarini, one of the world experts on PMR: One is

Polymyalgia rheumatica and giant-cell arteritis by Carlo Salvarani, Fabrizio Cantini, Gene G Hunder

which says, under Laboratory findings and imaging,

"Laboratory findings in both polymyalgia rheumatica and giant-cell arteritis are non-specifi c but indicate the infl ammatory nature of these syndromes. An ESR of at least 40 mm/h has been included in all sets of criteria for the diagnosis of polymyalgia rheumatica.1–3 However, a A B C Figure 3: Ultrasonography (A) and MRI (B) of the shoulder, and fl uorodeoxyglucose PET (C) of patients with isolated (absence of signs or symptoms of giant-cell arteritis) untreated polymyalgia rheumatica (A) Ultrasonography shows the presence of fl uid within the subacromial bursa (arrows) and surrounding the long biceps tendon groove (arrowheads). (B) An axial T2 weighted section shows subacromial and subdeltoid bursitis (pentagon), joint eff usion (arrow), and tenosynovitis of the long head of the biceps (arrowhead). (C) Fluorodeoxyglucose PET shows infl ammatory fl uorodeoxyglucose uptake in the shoulders (arrows) and absence of vascular uptake. Seminar www.thelancet.com Vol 372 July 19, 2008 239 normal ESR has been reported in 7–20% of the patients with polymyalgia rheumatica.79 The American College of Rheumatology classifi cation criteria for giant-cell arteritis include an ESR of 50 mm/h or more.4 However, an ESR less than 40 mm/h has been noted in 5·4% of patients, and less than 50 mm/h in 10·8%.80 Therefore, a normal ESR does not exclude polymyalgia rheumatica or giant-cell arteritis, particularly when other clinical fi ndings suggest these diagnoses."

Have I asked you where you are?

16

Hi Eileen I think you have asked me previously but I'm in the Highlands of Scotland Inverness -Shire

17

Hi Eileen I cannot find the link but have googled the authors and found what I think is the article. Is it from the lancet?

18

It is yes - the link takes you to a free full text version - did you find that? If not, say and I'll find it again and pm you the link.

19

Who couldn't find the free text version and I'm sure link isn't there

20

Sending it to you as a pm.