New Medicine

[smoothilly]

I am in Italy and a friend with Crohn's told me about a new medicine called Cortiment 9mg, Budesonide. It is a class of corticosteriods. He says it has very little side effects. Has anyone ever heard of this and could it be used to treat PMR? I am currently on 6 mgs of Medrol and would love to lose all the side effects.

[nevagivup]

Online you will see that Budesonide is mainly used for Asthma and inflammatory bowel diseases. I have used it in inhalers for asthma, so it is not new. Prednisolone/Prednisone are the drugs of choice for PMR because they are effective. There are side-effects from whatever form of corticosteroid we take. Inhaled corticosteroids can also lead to adrenal insufficiency.

[smoothilly in reply to nevagivup]

Hi nevegivup! Yes, I went online and read about it. It seems it has just as many side effects as Prednisone. I will stick with Medrol and I just started my 5 week reduction plan so hopefully I will slowly wean myself off it.

[jinasc]

I only want to say, there is not a drug existing which does not come with side-effects and that includes homeopathic items that have been around since pussy was a kitten.

[smoothilly in reply to jinasc]

Just so!

[PMRpro Ambassador]

All steroids have the same sort of potential side effects - but individual patients may respond differently.

I had no apparent side effects on prednisolone. However, when I moved here to Italy I was switched to Medrol (methyl prednisolone) as prednisolone isn't available here and from day 1 I hated it. I felt unwell, gained weight and became very Cushingoid and over time had to raise the dose as it was not as effective. On prednisolone I'd done well at about 10mg, with Medrol I needed 20mg taken at night to get any relief, and it took until lunchtime before I felt any better. Then my GP switched me to Lodotra, a form of delayed release prednisone, the only prednisone available here. I went from 20 mg Medrol to 15mg Lodotra overnight - and got the same miracle relief I'd had originally. I also started to lose the Medrol-associated weight gain, eventually losing about 35lbs while still taking steroids. Within a few months I had reduced below 10mg and eventually managed to get below 5mg. Then I had a flare. But even at the higher doses I had no apparent side effects and I feel well. Currently I'm at 8mg, 7mg works for the PMR, but the fatigue is overwhelming.

Budenoside is a prolonged release form and designed to release in the colon - where it manages the gut inflammation found in Crohns. It's a case of horses for courses - and while it MIGHT work for PMR, it probably isn't as good as when it is used in Crohns.

[SusanEleven]

I have Budesonide from my ear/nose/throat doctor to add to my neti pot sinus rinse. It 's a liquid in individual tubes and usually used in a nebulizer for asthma. We've had to throw a lot of meds at my sinuses to keep them tolerable. She knows I'm sitting at 4mg pred for now and says the rinse won't add a lot of steroids on top of my oral dose.

[PMRpro Ambassador in reply to SusanEleven]

I don't know if I have asked before but if you have PMR/GCA symptoms - has anyone ever considered your sinus problems could be due to a vasculitis?

[SusanEleven in reply to PMRpro]

@PMRpro

Alas, yes, just recently and the idea terrifies me. Once again PMRpro you are on target. I posted pre-test in the Vasculitis group but seem to have been passed by for answers.

My lifelong sinus issues have been worse since PMR. On a hunch my rheum doc did tests in January 2017. Positive P-ANCA. Low levels of MPO antibodies. She sent me off to a rather brusque ear/nose/throat specialist who said maybe the results were a fluke and he didn’t see any signs in my sinuses, just that they are a mess from a lifetime of previous sinus infections. He passed me off to a colleague who basically bombed my sinuses into submission with antibiotics for an infection and a 10-day burst of high dose prednisone. My daily routine is a steroid spray for my nose, an antihistamine spray for my nose, and my twice-daily saline rinse but with Budesonide added. Plus a daily 24-hour antihistamine plus twice-daily maximum strength Mucinex. Quite the routine.

My rheum doc retested in March of this year. It’s not a fluke. I’m positive P-ANCA with still-low-level MPO antibodies. Though in PMR-land my CRP was normal for the first time in 2 years at my no-more-tapering-for-now 4mg pred per day.

She did a urine test and results were perfect, so my kidneys are not currently threatened. She basically said she will monitor me for...forever.

She also said that if active disease happens that MPO antibodies are the “better” of the bad because there are effective drug treatments with a high success rate for smacking it into remission (paraphrasing a bit here).

My head is still spinning and I have the occasional weepfest. My current ENT doc says I “clearly have autoimmune tendencies.” Hashimotos. PMR. And now these new test results. Though none of my siblings have these issues (nor did my parents) I still like to say my gene pool is a cesspool.

[PMRpro Ambassador in reply to SusanEleven]

Where are you?

[SusanEleven in reply to PMRpro]

I'm in the US, just north of Boston. I get my care at Lahey Medical Center.

[PMRpro Ambassador in reply to SusanEleven]

Had you been in the UK I could have pointed to vasculitis experts - and it really does need to be one rather than just s rheumatologist. As for ENT????? Probably not - though you would THINK they would recognise one involving sinuses.

[SusanEleven in reply to PMRpro]

Agreed. She's a marvelous rheumy but this is scary stuff. (As an aside, she and I work well together. When I flared on my very first PMR taper reduction two years and told her about the slow plans I found here, she said I was clearly capable of handling my own taper and she'd write me pred prescriptions for whatever dose I needed. She's also the one who said she'd she'd rather I increase my pred back to 4 and stay there instead of taking daily ibuprofen for arthritis and other pain. Which worked perfectly.)

Lahey has good staff and they are merging with the very famous Beth Israel Deaconess in Boston, so I'm going to read through the bios for vasculitis folks, though I'm not sure what I'm looking for yet.

I didn't like the ENT specialist. The regular ENT has been keeping my sinuses functioning but I'm not sure she's connecting the dots. She looked at me and said "you have nasal crusting." I went hmmmm, where have I read that...and went home and looked it up and it can be part of vasculitis. She's also the one who prescribed Cipro (!) for the sinus infection. Thankfully my pharmacist (who knows my medical issues) said "I wouldn't take it. Ask her to change it to doxycycline." Which I did and avoided that crazy family of fluoroquinolones.

It never ends. Onward and upward.

[PMRpro Ambassador in reply to SusanEleven]

A study found 30% of doctors overestimated the benefits of a medication and underestimated the problems. They appear to believe the marketing - which I find seriously scary!!!! Though to be fair - I did work for a market research company that did clinical study stuff so I saw what the medics said during interviews (citations) and how the pharma company then used it. Hum!

I think I shall stick to being cynical/sceptical.

[smoothilly in reply to SusanEleven]

Thank you for the info Susan.