Extremely Frustrating Flare.

[BritMarie]

It’s been a while since I have been on here after posting my intro! Since being diagnosed in March- my life has changed quite a bit.
The 60 mg of prednisone had me up to 212 pounds and I had had enough.
I sought out a nutritionist and have worked hard to completely eliminate sugar and starch from my diet. I am down to 184 and at 10mg pred, working my way off and feeling pretty awesome until this month.
I’ve had two shoulder flares, one on each side. Excruciating pain and complete paralysis. It runs its course and is done in about 4 days but it completely ruins me for four days.
I am on methotrexate, still on pred, and started taking CBD Oil which significantly helps, however when it’s flared absolutely nothing helps.
Still on a quest to figure out WHY the sudden random pain after months of being fine. Just trying to see if anyone can relate or has any suggestions?
Thanks,
Brit

[Pete]

A few questions and thoughts for you with the caveat that I haven’t had the symptoms you describe.

How much methotrexate are you taking? It’s generally used for maintenance after disease activity is under control. Perhaps a stronger drug might produce better results.

How quickly did you taper from 60 to 10 mg of pred? Slower is generally better. You can go a little faster at first, but as your dose decreases, subsequent reductions are a larger percentage of the previous dose. It took me nine months to taper from 5 mg to zero at a rate of 0.5 mg/month. I’ve been off pred for a little over three months.

I’m guessing that CBD oil is cannabis? Did your doc prescribe or recommend it? Could there be some sort of adverse drug interaction occurring? You might want to discuss this with your doc.

I’m glad a better diet is helping you lose weight. Keep it up!

I hope you and your doc develop a treatment plan that’s effective.

[seied]

Sorry you're going through this again.

I had a similar experience. When I suffered my first flare up a few of months ago, I had to increase prednisone back to 20mg and I'm tapering back down at a rate that maintains these symptoms at bay.

As to why, I think the flare up happened because the symptoms started to come back and I didn't adjust prednisone right away to combat the inflammation. At that time, I was doing really well all the way down from 60mg to 3mg and my (former) doctor (wrongfully) had me continue tapering anyway all the way down to zero. A full-fledge flare up ensued.

I'm down to 5mg again and barely able to suppress the subtle and smoldering symptoms of shoulder, wrist and ankle pain and weakness; however, 5mg is a relatively safe dose.

I'll see what the future brings. I'm hoping to reduce prednisone by 1mg a month, but if I can't, I'll stay at 5mg for the foreseeable future. I'm also willing to increase up to 10mg right away if the inflammation starts to come back.

Hope this helps.

Ed.

[seied]

Pete, it's so nice that you're able to be off prednisone completely. I'll follow your advice to taper .5mg a month.

I'm on Mtx, just like Brit, and it's working well for me. Other than constant fatigue and need for naps during the day, I still think it is better than the other more powerful drugs.

Ed.

[BritMarie]

Thanks Pete:
I am taking 12mg methotrexate once a week. I’ve tapered from 60-10 pred over 6 months.
I have an appointment with my Rheumy on Oct. 4th. I’m going to talk to them about maybe staying at 10mg for a little while and having something prescribed for flare ups.
I haven’t discussed the CBD with doc- I may soon, but it’s THC and really helping daily with general pain.

Thanks for your support and thoughts!! :)

[BritMarie]

I can’t edit my reply but I meant to type that my CBD is THC Free.

[John S]

I can’t edit my reply but I meant to type that my CBD is THC Free.

That's no fun

[BritMarie]

I know :) but it does help significantly- except for huge flares

[Jaha]

I'm sorry that you are having the pain and do think you are probably flaring. I really hope that gets resolved for you with your doctors help.
My PCP, recommended CBS oil for me and I am just now trying it for the relentless pain. I love in a state that has legalized it to a certain degree.There is to much stigma still about who chooses to use this natural medicine as it should be. I'm glad that you have at least found something that helps you.
I am still in steroids after over 8yrs and have to go up and down on them.It is such a roller coaster ride.
Don't forget to take baby steps to recovery or I mean remission. Not everything works for everyone.
Please take care and best wishes to you for a pain free existence.

[Alysia]

Be careful with CBD oil. It is contraindicated with steroids. Read here: https://cbdoilreview.org/cbd-cannabidiol/cbd-p-450-enzyme/

If you google it you can find more info. For example a warning considering its use with kidneys illness and others.

I am afraid that the "stigma" works in the wrong direction. Too many reccomand using CBD oil.

I have seen too many people with adverse affects from canabis use: it can cause memory problems, apathy and lack of motivation, depression and even psychosis. I saw it in my work (I worked in a psychiatric hospital many years).

I also made some online research about CBD oil not long ago. My mom suffers from Parkinsons' disease and we thought it might help her. I read many researches. It isn't really helpful in physical measurments. Only in general emotional feeling. The patients thought that they were doing better although actually they didnt. It put them in higher risk of confusion.

I wouldn't touch it.

[little jerry]

I have had that symptom also and they called it migratory arthritis. My elbow might hurt a couple of days and my foot might hurt next. I used to wonder what I did to it to make it hurt. I just had to rest that spot for a couple days. I also got some relief with CBD oil and I found it works better with THC oil also. Its called the entourage effect. Its drug math 1+1=3. I have used it topical in a salve and it worked good. Also it comes in sublingual that is handy but you must live where its legal. I live in Nevada so everything is legal.
little jerry

[Masha]

Nothing in the Carolinas is legal, except BBQ

[drz]

Roving joint pain was one of my most confusing and disabling symptoms before I got diagnosed correctly and treated for GPA. But none of the many doctors I consulted about it had a clue about it or what caused it, GPA!


I have had that symptom also and they called it migratory arthritis. My elbow might hurt a couple of days and my foot might hurt next. I used to wonder what I did to it to make it hurt. I just had to rest that spot for a couple days. I also got some relief with CBD oil and I found it works better with THC oil also. Its called the entourage effect. Its drug math 1+1=3. I have used it topical in a salve and it worked good. Also it comes in sublingual that is handy but you must live where its legal. I live in Nevada so everything is legal.
little jerry

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wow, i’m exactly the same as you. I started on 50mg a day of Predisinole 5.5 years ago....I managed to get down to 7 mg which took several years and a lot of hard work. When i got a chest infection about a year ago i was on amoxicillin and told to stop my azathiprine and increase my predisinole to 20....It’s took me 8 months to come down 2mg.....i’m still on 18 a day which my consultant said is way to high ....but coming down is a nightmare with illnesss and life!

Do you have GPA?. xx

[ShellLeighScott]

Hi Brit!

I can relate to the frustration of Wegener's 100% and I am sorry! For me it has been constant with new/different symptoms throughout my 2 1/2 years and at this point I look at it like that anything and everything is possible and you just never symptom may be up next.

I am so happy for you and your weight loss and wanting to get under it! I was in your same boat and prednisone made me ravenously hungry and I gained weight but have since learned that it does not have to be the case with proper diet. It is empowering to get under the weight struggles and as if we are at least winning in one area of this condition. I pray for your continued success with that!

Thank you for sharing too because I have not experienced what you have with the shoulders but by sharing you bring awareness and it is appreciated!