New to PMR: My wife was recently diagnosed with... - PMRGCAuk

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New to PMR

CrushGrapes profile image
25 Replies

My wife was recently diagnosed with Polymyalgia Rheumatica. She received a prescription for prednisone, which was adequate, but it had the side effect of causing internal bleeding. Does anyone know if there is an alternative to prednisone? Or is prednisone available as an injectable?

Many thanks!

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CrushGrapes profile image
CrushGrapes
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25 Replies
piglette profile image
piglette

She should have been offered a PPI such as Omeprazole. Alternately she could be prescribed the enteric coated version of the prednisone. In the US she could also be prescribed Tocilizumab. There is an injectable form of prednisone. You really need to talk to your doctor about the stomach bleeding though and also the steroids.

CrushGrapes profile image
CrushGrapes in reply to piglette

Great thoughts. Thank you. She has an appointment in the coming week and we want to be prepared.

Amkoffee profile image
Amkoffee in reply to piglette

How does Tocilizumab work for PMR?

HeronNS profile image
HeronNS in reply to Amkoffee

It targets one of the cytokines often implicated in the development of inflammation.

arthritis.ca/treatment/medi...

Amkoffee profile image
Amkoffee in reply to HeronNS

Ty good to know. I'm betting I haven't tried it because it was too expensive. It's not yet available by generic so it probably costs too much even with insurance.

piglette profile image
piglette in reply to Amkoffee

Got it in one, it is pricey!!

PMRpro profile image
PMRproAmbassador in reply to Amkoffee

It is a biologic so won't come as a generic - but a biosimilar. The production process is the same - and that is what contributes to the cost.

PMRpro profile image
PMRproAmbassador

The enteric coated prednisolone piglette refers to is only available in the UK but a few people have sourced gastric resistent capsules that they put their pred into and take it before bed - it releases about 2am which is the ideal time to take pred for management of morning symptoms. By doing that the pred is not released unti lthe capsule has reached the duodenum, removing the gastric acid aspect of stomach irritation.

Studies have been done using depotMedrol deep intramuscular injections which are good when used properly - it is important not to leave them too long so the symptoms start up again, once a month is the recommendation. There are posts from someone who used them here:

healthunlocked.com/user/Adm...

The original study is here:

ncbi.nlm.nih.gov/pmc/articl...

There is another approach using shoulder injections - which seems rather strange to me and which didn;t really seem to go down well with patients as several withdrew because of recurrence of symptoms. The approach used by Dasgupta has been used by a couple of people currently on the forum but one was messed about a bit by her rheumy who wouldn't give the injections regularly enough,

In the USA you may be able to get tocilizumab/Actemra funded for PMR - there are a few small studies using it in PMR the most recent being this:

acrabstracts.org/abstract/t...

pubmed.ncbi.nlm.nih.gov/352...

is the link for the published paper

piglette profile image
piglette in reply to PMRpro

Sorry I was thinking of Rayos not enteric coated, delayed coated!!

CrushGrapes profile image
CrushGrapes in reply to PMRpro

This is helpful in a very practical way. Many thanks!

PMRpro profile image
PMRproAmbassador in reply to CrushGrapes

The Rayos piglette has just mentioned is available in the USA - at a price (I'm told thousands of dollars whereas here in Europe it is less than 30 euros for 30 tablets)! However, it just delays the release of the pred in the stomach, the coating is designed to break down in the stomach in the right conditions (taken with food or within 3 hours of the evening meal) but it does still expose the stomach to the pred. I've been on it at over 15mg/day for years and have no gastric problems I'm aware of.

HeronNS profile image
HeronNS

What dose of pred is she on, and is she very careful to take it only with food, never on an empty stomach, and avoiding painkillers that may also affect the stomach.

Hello CrushGrapes,

I was prescribed prednisolone, it might be better than prednisone. I've not had stomach troubles with it.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Prednisolone is used in UK whereas in US where Crushgrapes and wife live Prednisone is prescribed. Not sure they have a choice…

in reply to DorsetLady

Thank you. I hope they do.

Karenjaninaz profile image
Karenjaninaz

Did your wife actually have stomach bleeding to start with or are you reading the side effects of prednisone and got scared? Did she start to bleed now?

In the past I had H-Pylori which is a bacterial infection which causes ulcers and bleeding. A course of antibiotics cleared it. There is a “breath test” to diagnose it.

My stomach has been more sensitive after that bout.

In higher doses of pred- say over 10mgm I did get stomach pain but no bleeding. That was helped by Pepcid maximum strength daily. PPI

s work but causes me gas. PPI = nexium, Prilosec and the like. If you take any acid blocker you impede absorption B12 which is not good for aging brains.

I also suggest a good multivitamin because steroids decrease absorption of other necessary vitamins. I checked Costcos / Equate Multies at Consumer Lab and they tested them for purity and actual vitamin content.

Retired nurse-anesthetist here from NJ

CrushGrapes profile image
CrushGrapes in reply to Karenjaninaz

My wife had black stool and it was confirmed that she had internal bleeding on a visit to the ER around August 6th. They did not do an endoscope examination because they believed the episode was over. Unfortunately, when she took prednisone again the black stool returned. She is visiting the rheumatologist this week. Thank you for your thoughts.

Karenjaninaz profile image
Karenjaninaz in reply to CrushGrapes

She definitely needs an endoscope; not to do it is crazy. What if the bleeding is from something else, an infection or an ulcer that is aggravated by the prednisone. Has she ever had scoping done before?

I’ve had many..

What state are you in?

PMRpro profile image
PMRproAmbassador in reply to Karenjaninaz

Couldn't agree more - more crystal balls and x-ray vision ...

CrushGrapes profile image
CrushGrapes in reply to Karenjaninaz

We live in two locations. Williamsburg, VA, and Bradenton, FL (which means we've had to juggle our healthcare teams). She is definitely going to have an endoscopic procedure -- hopefully this week.

PMRpro profile image
PMRproAmbassador in reply to CrushGrapes

I've been to Williamsburg!!! Nice place we thought,

phebamom profile image
phebamom

I have a bad stomach. I had bleeding in my stomach for 18 months until I went on Prevacid 15mg 2x daily. On prednisone 10 plus years. Need to get off it. Actemra has SED down to 11, so it is time. See rheumy in November. Prevacid is similar to prilosec. My body does better on Prevacid. Do not know why. Pepcid AC was good for a while, but it stopped working. Also, take prednisone with yogurt, not fat free, low fat. You need some fat to help coat stomach. Drink a lot of water. NO fizzy drinks of any kind. The phosphate acid in soda will eat your stomach wall and deplete minerals from your bones. Keep tea to a minimum. I love my tea, keep it to one or two cups of decaf in the morning Tannic acid in tea hard on tummy. You have my sympathy. We are all different, but for those of us with a sensitive tummy prednisone is very hard to take. the enteric prednisone is not prescribed much in the US. My rheumy told me it was just delaying the problem. the pred breaks down in intestines and still causes erosion only much lower down.

PMRpro profile image
PMRproAmbassador in reply to phebamom

The fact that your sed rate is down to 11 does NOT mean that the PMR is gone - it is the way Actemra works and it makes the sed rate and CRP meaningless. You go by symptoms and other markers - in Germany they use calprotectin in some cases. That is all over the literature but a lot of rheumies seem oblivious.

phebamom profile image
phebamom in reply to PMRpro

I agree. In my case my rheumy and I go by how I feel. I am feeling like a human being again on Actemra. I know that in my case I will always have this disease. I have had it over 20 years. It is not going away in my case. The difference between a SED of 103 and a SED of 11 is amazing and impossible to describe to someone who has not been there, I have a blood disorder called MGUS. I carry a monoclonal protein in my blood. It can cause Multiple Myeloma. In my case the numbers stay very low that cause the cancer. So, just MGUS. But the protein does cause the sedimentation rate to be skewed in the SED test, MGUS does not cause inflammation. It skews the test. I would imagine there are a lot of factors that go into a SED rate test, my condition being just one. My rheumy goes more on how I feel, and how my husband tells my rheumy what he sees in my activity level. I have a very good rheumatologist. At this point in my life, I am 67, and have suffered for years; I will take every single decent day Actemra gives me. I need to get off prednisone because of the damage it is doing to my blood vessels, and my kidneys because of hypertension. I see the hypertension/kidney specialist on sept. 12. Will post when I know more.

phebamom profile image
phebamom

The reason my rheumy said enteric coated would be bad for me is that I have been in hospital twice for collapsed small intestines. So bear this in mind if you are pursuing the enteric coated prednisone. It is not for those with a poor digestive system. I recommend Prevacid or Prilosec along with yogurt or other food. Drink a ton of water. You have my sympathy. Having a bad tummy is a true challenge.

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