Connect
Traveling with PMR
I am thinking about taking a cross country trip, for the first time in six years. My close cousin is getting married.
Most days my PMR pain is still high, even on 6-8mg. of Methylprednisolone. It gets a little better as the day goes on, but most days I have to push myself.
I am trying to decide between flying, or taking the train in a roomette.
Can anybody weigh in on the pros and cons of these options?
I am worried about not enjoining the trip if I’m in pain, but I have already missed out on so much in life.
Kathy
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
There is sure a lot of things to consider when dealing with PMR. I do believe that splitting the dose does seem to work for me (and my rheumatologist has no problem with splitting) However, I am not sure what time of the day works best. My first doctor (not a Rheumatologist) prescribed 15 mg prednisone taken once in the morning. That schedule did not help with my early morning pain. I then split the dose evenly and took half at around 7 or 8 am and the second dose at around 8 to 9pm. I believe that help me alot. My rheumatologist who I met with about 2 months later increased the dose to 20 mg/day splitting the dose between morning and evening. Now I am down to 9 mg/day and doing ok with a split dose of 5mg mornings and 4mg evenings. Does anyone have positive results of split dose with the evening dose taken very late in the evening (for example 11pm to 2pm) ? I have experimented with taking the evening dose as early as 6pm and as late as 11pm and I am not sure (can't remember) which time was best. As I reduce the dose below 9mg/day I am worried about how, when and if the dose should be split.
Does anybody take Rinvoq? Does it work for you? What's is the best treatment? Im newly diagnosed and I am miserable.
@chamberlainrebekah5 Here is a thread that has been active lately - https://connect.mayoclinic.org/discussion/who-is-on-rinvoq-for-gca-vs-actemra/
I have been taking weekly Actemra injections for a year and a half, and that has worked well for me. I've been off of prednisone for 6 months, and I haven't had any symptoms or flares in the past 20 months.
Are you currently taking prednisone? What dose are you on? When were you diagnosed? Are you miserable because of GCA or because of prednisone?
@jeff97 my doctor doesn't have me taking any prednisone. Im miserable because of the polymyalgia rheumatica. Thanks for reaching out.
@jeff97 I was seeing good results with kevzarra but I was getting sores in my mouth
@chamberlainrebekah5
I'm sorry you're having such a difficult time. I don't think Rinvoq is approved for PMR, and as far as I know it isn't used with PMR. Can you not take prednisone? It seems like it could help you feel better until you get established with another treatment.
Some people take Actemra to treat PMR, but it works similarly to Kevzara, so it might cause the same problem you have had with Kevzara.
Methotrexate works for some people.
Has your doctor talked about any other treatments?
-
Like -
Helpful -
Hug
2 Reactions@jeff97 no, he hasn't. I was confused that he didn't even try prednisone or methotrexate. Maybe because I mentioned my fear of gaining weight since that is something I already struggle with
@chamberlainrebekah5
The use of Rinvoq is catching on quickly. I think doctors are very willing to try these newer treatments options for PMR/GCA. It has been well known for many years that long term Prednisone use wasn't a great option for PMR/GCA.
https://www.clinicaltrialvanguard.com/news/abbvies-rinvoq-a-surging-new-option-for-gca-treatment/
---------------------
I believe these newer and perhaps "better" treatment options are long overdue. More and more, I think Prednisone is seen as a "short term" bridge to some of these other options. The biggest drawback to the newer options is the cost. Rinvoq will have the advantage because it can be taken orally.
@chamberlainrebekah5
Prednisone can reduce your pain quickly. For a lot of people, it works almost immediately. All of my symptoms of PMR and GCA were gone by the second day, but I was on a high dose of prednisone.
I took prednisone for a 14 months. During that time, I gained 4 pounds early on, but I lost it all as I tapered. Some people reduce the amount of carbs they eat to help control weight gain. I'm sure a lot of people on this forum could give you advice about controlling your weight while you're taking prednisone.
There are other side effects that prednisone can cause, but there are ways to lessen those, like other medications and supplements. You can get more information from this forum if you're interested.
I had untreated PMR for about a year, so I know what that is like. I also had untreated GCA for several months. My quality of life was much better once I started taking prednisone. If you take another drug like methotrexate, it could take up to a few months to take full effect. You could take prednisone in the meantime to help your pain.
Thank you so much