My rheumy isn't returning my calls about my fatigue issue

Has he given up on me because he doesn't know how to deal with my fatigue issue? I get debilitating bouts of fatigue that can last a couple days to over a week. I've met with several rheumys and really like my current rheumy very much. He has always spent the time to go through my typed list of questions, answer me thoroughly and discusses treatment options with me as though we are a team working on a solution.

However, now with my fatigue issue, I haven't heard from him. I was able to move up my next appointment to April 8th and have a great tip sheet on how to talk to your doc about fatigue sent by Dandlyons.

Any advice on how to handle my next visit - now I'm very apprehensive about my appointment because he hasn't returned my calls. And I rarely call him - I'm not a frequent caller.

I am wondering if this might be unrelated to the PsA? I recently accepted treatment for fibromyalgia, and I feel like a new person. Anyway, I also joined the Ben's Friends Fibro site and found that A LOT of them have fatigue. Some even have that as their major symptom. Just a thought.

As far as your doc goes, don't take it personally yet. Wait for your appointment and see what feeling you get then. Some docs do get frustrated when they can't "fix" us, but give him a chance until you see him in person.

Hugs!

I'm definitely giving him a chance ! He's been wonderful and I want to keep him as my doc. You're right, I think they do get frustrated when they can't fix something.

Can you tell me more about the fibro treatment - is it meds they give you. I'm extremely interested and I'm so glad you feeling much better !

appreciatively,

Frances

I wouldn't use the FM word though. Ikey in on an older/different name: Chronic Fatigue syndrom. That way you avoid the "bad connotations"

Good thought, Lamb.

I am taking Lyrica. Its been a huge change for me.

I'm so glad you've found a med that has given you great relief ! Yay !!! Unfortunately, for me Lyrica has the side effect of causing sleepiness. However, I did research other Fibro meds and there's one called Savella used for fatigue. I'm going to discuss that med with my rheumy - thanks for the idea !

GrumpyCat said:

Good thought, Lamb.

I am taking Lyrica. Its been a huge change for me.

Lyrica made me sleepy for the first day, but after that it was golden.

It might be time to think outside of the box, and if your rheum is good, he can help you do that.

Yes it is time to think outside the box !

GrumpyCat said:

Lyrica made me sleepy for the first day, but after that it was golden.

It might be time to think outside of the box, and if your rheum is good, he can help you do that.

Thanks to everyone on this forum I was REALLY prepared and felt empowered to have a my fatigue discussion with my rheumy - who has been an amazing doc. I have never explained my fatigue issue clearly and how it affects my life.

I even brought my Mommy to share her observations and we met before and worked out a plan for the discussion. I had a type written several page briefing I read him.

The discussion went EXTREMELY well. It was a real productive very long discussion between the three of us. He asked me about my ideas first and this is what I said:

1. Try MTX again, but injectable, because I couldn't tolerate it before

2. Try Savella (thanks Grumpycat) a med used to help fibro fatigue

3. Try Arava

He asked me what I thought about taking a lower dose of MTX along with a med to help with the side effects - Leucovorin. And meanwhile, he told me to research the following drugs (because he knows I like to research everything):

1. Provigil

2. Nuvigil

3. Adderall

He said to try the MTX for at least a month. And to make an app't in 2 months.

First Dose MTX RESULTS Last Friday

I took 5mg Friday night (previous dose was 10 mg). No nausea, felt fine, but i slept 18 hours Friday to Saturday night and slept most of Sunday . So, I'm not going to take anymore MTX and will research the other meds.

Another bout of coma sleep yesterday.

slept 18 hours yesterday and 14 hours today. I'm sure the change in weather here caused it. It snowed/sleeted and the temperature dropped drastically.

I'm calling my rheumy to get an app't asap. I'm not waiting 2 months.

Of the three provigil would seem to be the best fit for you - it has the fewest side effects and allergic reactions. The aderall is worth a bundle on the street so should it work you could finance a great vacation if you didn't wind up in the pen. Its real life name is Amphetamine Salts. You WILL crash hard at night in a not pretty way

Get rid of the Arthritis Weather App, before it drives you bonkers. Its based on effects on the synovium - most generally NOT a sytstemic issue or cause of fatigue. Remember you do NOT have RA.

My rheumy also said I have an EXTREME PsA fatigue issue. It was nice to hear that we are on the same page - we both believe it is EXTREME.

No question of that................

I found that when the leflunomide kicked in that I did have less fatigue for a while. Hopefully it will have an impact on you as well if you wind up trying it. It’s good to hear that you have a game plan.

Thanks Stoney. I just hope I win the game :-)

Stoney said:

I found that when the leflunomide kicked in that I did have less fatigue for a while. Hopefully it will have an impact on you as well if you wind up trying it. It's good to hear that you have a game plan.

This may be silly, but what is your b12 level and vit d level? You may need to supplement.

No it isn't silly. I do take b12 supplement and when I was first diagnosed my vit d level was low and I take a prescription Vit D now. Any thoughts and ideas are always welcomed ! Thanks for taking the time to respond.

lrcjvl said:

This may be silly, but what is your b12 level and vit d level? You may need to supplement.

Glad to hear your conversation with the doc went so well. It makes a huge difference to have a doc who listens and problem solves WITH you

I know how frustrating it can be at times when you feel like you cannot get through to your doctor. I once explained how significant a problem the fatigue was for me when a treatment was failing. That doctor said that my fatigue made no medical sense. Fortunately, I changed doctors and medications and things got better.

I am so glad to hear of your fruitful conversation. It sounds productive all around. Great to have everyone on the same page and working together toward a solution. I know what a struggle it has been for you. I wish you much luck with the treatments.

1 Like

Thanks for your thoughts Lamb. This is some info I found on Provigil:

"With a 15-hour half-life, a morning dose will usually last into the afternoon, and the amount left in the body at bedtime generally doesn’t cause insomnia."

So what am I suppose to do every afternoon when it wears off? Do you know of any time released provigil any thoughts on how to get me through an ENTIRE day?

tntlamb said:

Of the three provigil would seem to be the best fit for you - it has the fewest side effects and allergic reactions. The aderall is worth a bundle on the street so should it work you could finance a great vacation if you didn't wind up in the pen. Its real life name is Amphetamine Salts. You WILL crash hard at night in a not pretty way

Get rid of the Arthritis Weather App, before it drives you bonkers. Its based on effects on the synovium - most generally NOT a sytstemic issue or cause of fatigue. Remember you do NOT have RA.

Just reading the info on provigil, it sounds like it might be worth a try. If the first dose of the day lasts into the afternoon, and begins to wear off at that time, it might last until bedtime. Remember, there will still be drug left in your system at that afternoon time.

Half-life is explained like this. If the dose is 1000mg and the half life is 15 hours, then in 15 hours you will still have 500mg left in your system. After 30 hours, your will have 250mg, and so on. I picked a doses that was easy to divide, I have no idea what the dosing is for provigil.

I hope that helps.