Jacob Barie MD.....79yo male with PMR..on Prednisone

[jbarie]

Acute viral infection ..temp.102.8 followed by pelvic girdle and lower extremity & musculoskeletal pain, severe anorexia, 10 to 12 lb weight loss and sed rate @96... also associated with a chronic history of low back pain... which had become worse during this episode of probable PMR. Responded to 30 milligrams of prednisone within 24 hours..... in 4 months have tapered to 7.0 milligrams of prednisone... sed rate is now approximately 6 while on 7.5 milligrams of prednisone.... although feeling some fatigue when reducing dose to 7mg....it is not entirely clear whether the post pred. reduction symptoms are due to adrenal fatigue or secondary to PMR.... still able to spend approximately two and a half hours on the treadmill per week. Also working with some weights to preserve muscle strength. Present meds include norvasc 5 milligrams,nexium 20mg,calcium citrate,B complex, vit. C , Vit. E, krill, flomax,cercumen,rhodeola rosea & ashwaganda..... would like to know if anyone else out there with PMR as noted any additional improvement utilizing the above-noted herbal adaptogens.... I believe I am experiencing some anti-inflammatory benefits. I'm avoiding any nonsteroidal anti inflammatories with a passion. At this point I've experienced no secondary prednisone side effects.... my goal with the help of my personal physician is to reduce the prednisone 0.5 milligrams every 2 to 4 weeks... since my symptoms are so variable and subjective in nature it is difficult to assess whether I am having any benefit fromthe use of herbal medicine. I clearly believe that the Cercumin ameliorates the back pain. The ashwaganda clearly helps with the insomnia. I am most curious to know whether the rhodeola in any way effects adrenal recovery.....

[Celtic PMRGCAuk volunteer]

Reducing from 30mgs to 7.5mgs in just 4 months is a very fast reduction, and you would be wise to remain at your present dose a little longer especially as you mention returning fatigue. Also when you do reduce further, you should slow the taper, spending longer than the planned 2 weeks at each new dose.

The only herb I added for its anti-inflammatory properties was turmeric, and then only in herb form not in pill form. Be sure to check out all the products you are taking for any contra-indications with Pred. The best person to advise you is a good pharmacist who will have more knowledge about drug/herb interactions than any GP.

[jbarie in reply to Celtic]

Unfortunately most pharmacists and even my own treating internist are not knowledgeable about herbal medicine and tend to discount their effectiveness.... yes, I agree that I've been put on a relatively rapid tapering course... and seem to be just barely getting by ...once I reached 10 milligrams QD..... neverthe less.... bottom line is that I'm still able to function.... I'm still wondering whether my tapering schedule has been in any way modified by my Herbal regimen of rhodiola and ashwaganda.... hard to say since there is such a big subjective element.... I may be dealing with an elaborate placebo effect... nevertheless my sed rate is still only 6 at 7.5mg ... But morning temperatures & fatigue below 97 F points to adrenal deficiency...You may be right....

[Hidden]

You have certainly done well with your reductions so far. I am down to 9 mg from 25 mg last March but do suffer withdrawal pain on each reduction. I do take Turmeric which does have circumin in it, and I find it helps a lot. I am also using Rhodiola as it helps me with the fatigue and mood swings. though I have read that it interferes with production of cortiscosteroid so probably not ideal with Prednisolone ... but as it helps me I shall continue it! I suffer some digestive discomfort from these too but a pharmacist said Nexium not recommended with steroids. I also have Ashwaganda but haven't tried it yet.

[jbarie in reply to Hidden]

If seeking the anti- inflammatory effects of tumeric, you might as well go all the way and take curcumin which has 95% curcuminoids... curcumin absorption is further enhanced with Bioperine if you can get it in combination. I strongly feel that the curcumin clearly resolved my back pain, but it took two or three weeks to fully realize it's efficacy..... some people also tout the benefits of tart sour cherry extracts for inflammatory joint pain, but I am not certain that its efficacy has been well documented.

[jbarie]

Curious to know why Nexium not recommended with steroids....is it related to impaired absorbtion? I would assume nexium would be beneficial since it prevents gastric acidity in the face of prednisone which can be associated with gastric ulcers. Although I am taking Nexium....I also take B complex, Iron & Calcium Citrate and Ubiquinol supplements to counter compromised absorbtion .

[Hidden in reply to jbarie]

The pharmacist recommended Zantac (Ranitidine) as the best option but none of them helped me as I seem to have low stomach acid. I am now using enteric coated capsules for my dose of Prednisolone. You don't mention Magnesium in your supplements. Maybe look into it as most of us are deficient. Needs to balance the calcium

[jbarie in reply to Hidden]

I agree that magnesium deficiency may be a risk factor,particular with respect to good heart health.... I had been taking Mg.,since it had been included in my calcium carbonate supplements until I switched to Calcium citrate which is absorbed somewhat better than calcium carbonate in the face of low gastric acidity created quite effectively by the Nexium. Now that I am down to physiologic levels of prednisone, I'm trying to get off the Nexium altogether, since a low acid stomach creates additional risk factors. Until then I probably will get back on magnesium.... now to get rid of the heartburn ! H2 blockers do not work as well as the PPI's.

[jbarie in reply to jbarie]

I

[jbarie in reply to jbarie]

Ignore above error.

[Hidden in reply to jbarie]

I find Slippery Elm relieves the heartburn

[jbarie in reply to Hidden]

Will look into it. Thanks

[jbarie1 in reply to jbarie]

I wouldn't take Nexium with or without steroids under any circumstance.. Nexium can cause vascular damage including renal failure... although it does reduce stomach acidity.... it can increase GERD because it promotes opening of the gastroesophageal sphincter. However if I developed ulcers secondary to prednisone usage then I would deal with it through the advice of a gastroenterologist.

[cjatthesea in reply to jbarie1]

I take a number of supplements to help make up for poor eating habits. I've been dealing with GCA/PMR for 22 months. Numerous Flares taking me back up several times to my starting dose of 60 mg Prednisone. Am now at 40 mg but struggle to taper any lower. Would like to add to the discussion a possible herb of interest. Marshmallow Root. It's something to research....I'm finding it very helpful.

[jbarie in reply to jbarie]

Sorry I did not pick up this reply until just now... I stay away from Nexium and all other proton pump inhibitors because there has been some studies(JAMA NEUROL.2015 revealing a link betweenPPI's and early onset of dementia. Aside from that alack of acidity in the stomach prevents the absorption of vital nutrients and minerals, for example magnesium... two complicated the problem to discuss but I'll take an acid stomach any day.... there are other ways to prevent prednisone induced gastric ulcers without compromising your ability to absorb vital nutrients and minerals.

[PMRpro Ambassador in reply to jbarie]

Never mind the magnesium - stops calcium absorption too so causes osteoporosis.

[HeronNS in reply to jbarie]

jbarie, you may find this article of interest: ods.od.nih.gov/factsheets/M...

Many older people are deficient in magnesium, but it's readily available in the diet. Don't take a magnesium supplement at the same time as any calcium supplement you may be on (unless it's included in that calcium supplement). Calcium prevents the absorption of magnesium. Magnesium is needed to activate Vitamin D. Along with Vitamin K2 it's an important micronutrient for getting calcium into the bones where it belongs.

[Sandy1947]

I appreciate your attention to my complicated case. My Drs. are at Columbia Presbyterian Hospital in New York City. Last blood work was slightly better than ESR 67, CRP 99. I am on 20 mg. Pred 15 mg 5 am 5 mg 5:00 pm Split dose to mitigate shoulder pain that intensifies during the night. Only take max. 600 mg Advil and one 200mg Advil PM to sleep. Take with food stopped Omneprazole. Neg biopsy for GCA. Eliminated carbs, sugar, wine . Weight 103 height 5'2. Have osteoporosis. Had 10% bone improvement with Prolio one year ago but can't take Prolio with steroids. Suppose to get Reclast in Sept. Started experiencing slight double vision only when driving. Saw Dr. yesterday who does not think it's GCA. At Columbia she treats a lot of GCA so I trust her. She will discuss treatment with Rheumie who wants me to stay the present course until appointment 7/31.

Not sure if I have sensitivity to Night shade vegetables. Exaggerated shoulder pain surfaced after I ate eggplant, pepper, mushrooms in tomatoe sauce. Have eliminated all but tomatoes. Rheumie says there is no scientific evidence re. anti inflammatory diet.

Where do you get curamed? VIt. K2 does not seem to address my situation since I have osteoporosis. Don't seem to have any more options. I tried ginger tea last night and it was too spicy...even added honey. Couldn't finish the cup. Eat seaweed salad, drink turmeric water, put turmeric on chicken. No more moves. Help!

Walk between 2.5-5 miles per day. Did 15 mins. light weights last week. Will try again. Sleep deprived...usually wake up at 3:30 am for the day. Today shoulder pain woke me at 1:30 am That's when I took Advil. Dr. says it's OK.

I appreciate suggestions. Tell me more about your current improvements, setbacks. Thanks. Sandy

[PMRpro Ambassador in reply to Sandy1947]

"Have osteoporosis. Had 10% bone improvement with Prolio one year ago but can't take Prolio with steroids"

I assume you mean Prolia/denosumab. Why can't you have it with steroids? polkadotcom on this site is on life-long pred, has been on denosumab for a few years now and her bone density is now classed as normal. I know of other people on pred who have been on it.

I have to say - your doctor may see a lot of GCA patients but the level of your inflammatory markers and the double vision would make me want to err on the side of caution given you have PMR-type symptoms. A negative biopsy means nothing - they just didn't find what they were looking for.

However - has anyone considered a spondyloarthropathy? They typically cause night time pain, can present very similarly to PMR and if the neck is badly affected can cause GCA-type symptoms. There is a lady on these forums who was originally diagnosed with GCA but after appearance of resistant PMR symptoms as she reduced the steroid dose she was eventually found to have ankylosing spondylitis - after a random remark about night time pain.

[Sandy1947 in reply to PMRpro]

You are absolutely brilliant. Yes, many years ago an orthopedist diagnosed spondylitis. I was treated over the years with a neck brace and drugs.condition came and went. Didn't think much about it. What kind of doctor diagnoses and treats ankylosing spondylitis? Is it treated with steroids? How are high markers reduced? I am experiencing slight wrist pain this morning.

I will notify my Rheumatologist with this addition to the equation.

My endocrinologist said you can't mix steroids with Prolio. I didn't think to question her.

You are amazing. Thanks for holding my hand every step of the way!

[PMRpro Ambassador in reply to Sandy1947]

Rheumatologists - and AS is nowadays treated with anti-TNF biologics:

"Currently, there are five licenced treatments, etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira), certolizumab pegol (Cimzia) and golimumab (Simponi) that can block the effect of TNFα."

AS pain typically wakes the patient in the early part of the night - while PMR pain tends to be after about 4.30am when the new batch of inflammatory substances is shed.

arthritisresearchuk.org/art...

Another lady on another forum was diagnosed with PMR at first but was sure it wasn't "just" that. With the help of her GP, she continued looking for a specialist - and eventually was diagnosed as having AS with a Behcets crossover, a very rare condition anyway. Now she is on the right drugs she is much better.

[Sandy1947 in reply to PMRpro]

Thanks detective PMRPro! I just emailed new info to Doctor. She responds quickly. I am leaving Thursday for trip to Boston (4 hour train). Staying until Monday then taking a drive and ferry to Nanucket until Friday. Need to take a break from all this! Any suggestions about easing travel? I know to take breaks and move around so I don't turn to stone with stiffness!

[PMRpro Ambassador in reply to Sandy1947]

Not much more to add really - rest when you can and move around when you can. Hauling suitcases isn't a good move either! If someone is there to help - take advantage!