I hate to be the voice of dissent. But not all rheumatologist are the same and the new (very expensive) class of drugs for this type of disease. We know a few people with RA and many have different treatments that without getting into are very different.
From what we hear, getting approval from your insurance company for this class of drug can be difficult. I would not if I was approved for a very expensive treatment even wade into another opinion. What could happen (not what would happen but what I would be afraid of) is that the new doctor would want to do a different (cheaper) treatment which is not always best for the patient.
I would wait and see if the treatment you are getting is working. From everything you’ve said Romani, this rheumatologist is on the cutting edge of the new treatments. And he diagnosed what you have in a very short time which from what I have heard can be hard just to get the right diagnosis. I just know too many people who have suffered for years and seen many doctors before getting the right diagnosis.
@abasket – Fitbit has excellent customer service, per my D. She’s gotten quite a few replacement Fitbits at no charge when hers has stopped working. (She has a Flex.) She even got a replacement when hers was stolen at the Crossfit gym! And then there’s my father – he mistakenly bought a Charge from LL Bean; he thought he was getting the Charge HR with the better watch strap type buckle. He should have just sent it back to LLB for the correct model, but he didn’t. After struggling with the clasp on the Charge for a couple weeks, he called Fitbit and complained about the way the Charge fastened. They said, “Oh, there must be something wrong with your Charge; we’ll send you a new one.” When he got it, he sent that one back to LLB, paid the difference, and got a Charge HR. (He still has the original Charge.) LLB may offer the Alta in the near future. I agree that using Bean Bucks is a big plus. That’s how I got my Charge HR, too.
In the good news department, I didn’t get (too) lost getting to D’s condo yesterday. There was a “minor” issue of the GPS trying to have me go the wrong way down a one-way street, but … And the snow tapered off, and it was actually sunny later in the day. Of course this morning it’s even colder and it’s snowing again. This is just plain nuts!
Thanks for sharing that CBB - I “can be” direct, to the point and downright politely pushy when I need to be on the phone - I think I"ve decided to give Fitbit customer service another try and just tell them that coming up with the bucks to purchase their product is not something I take lightly and that I really would like to and NEED TO have a product I can rely on - we shall see!
Late to the discussion romani, but I agree to talk to the new doc. As noted, this is a life long problem and it makes sense to find the best doctor to help you manage it.
@nottelling no worries, I always appreciate even the “obvious” advice.
I have a giant folder with all of my test results and everything that I carry with me to every appointment. I don’t trust computer system to work lol.
@deb922 I’m going to not drop the old Rheum but I have decided to go to the new one if for nothing else, a second opinion.
If it was just one disease, I’d be more comfortable staying with one but I’m at 2 (Lupus and RA) with new symptoms popping up here and there that don’t fit into either illness.
On that note, mixed bag today. My doctor’s office called this morning and my inflammatory markers aren’t where they should be. They’re down a little but still really high. My next appointment is June 1 and if they’re still elevated, we’re going to probably switch over to Methotrexate. For the first time since getting my diagnosis, I am legitimately scared.
@Romanigypsyeyes: Hope you can get the inflammation down by your next appointment.
Did a Slow Flow yoga class today and walked the dog for a mile before yoga this morning. We had just a few inches of snow then, but it’s been snowing all day and we’ve probably got about 4-5 inches now. April in New England!
I have a funny Fitbit story. The day that I was feeling awful, I used my Mind/Body app to sign up for a yoga class. I fell asleep and missed the class and never cancelled. Then next time I synced my Fitbit, it showed that I did 75 minutes of yoga and burned 92 calories!!
@C3Baker — I love the idea of Meb starting at the very back of the pack! It gives everyone a chance to run “with” him–and to see if they can keep up for a few (or more) steps!
@romanigypsyeyes — I know methotrexate sounds scary, but it’s actually pretty old and pretty well understood. My sister was a test patient for it in 1971 (as a cancer treatment)–she’s still doing fine.
Thanks, @dmd77 I don’t think I’m as much scared of the drug as the fact that my body isn’t responding to the treatment which should work. And in fact, in some ways, I’m getting worse.
I just want my blood work to start showing signs of improvement
@romanigypsyeyes - I too was afraid of Methotrexate and put off the prescription for a long time, I even asked about it on CC - but it was the next step in trying to stop increasing RA damage…it worked, at least for me. Absolutely no side effects and I have not had a single flare since I started the prescription at the standard starting prescription…I don’t have to run get predisone shots anymore - they told me I couldn’t keep doing that anyway! Now I have some pretty bad Osteo Arthritis that is driving my knees crazy but the RA seems to be held at bay for the moment. Good luck to you!
Yes, I know RA treatments take time. However, I’ve been on prednisone since December… that should’ve brought down my inflammation by now (at least somewhat).
Another drug takes up to 6 months, that is at 3 months now. The other takes up to two months and I’m a month in. The problem is that I should be seeing some improvement and I’m really not… and my blood work is reflecting that.
I knew that it would be a slow and complicated process because I’m not just treating one disease. The two diseases (Lupus & RA) are intertwined and the treatment for one can aggravate the other… which is what seems to be happening.
I’m just frustrated is all. Well, frustrated and scared.
So I had a conversation with Fitbit yesterday and I’m on my “last ditch effort” and following the rigmarole before they will likely replace my current bummer band. The representative read me all the notes she was putting on my case and will be recommending a replacement if this last “fix” doesn’t work. Not sure if they would be open to replacing the Charge HR with an Alta - they may since technically it is price wise less, however now I realize the that Alta does not have the “HR” - so not sure if I want to give up that! I’ll admit I don’t follow the HR a lot (maybe I should more) but I don’t have another unit that offers HR…first world problems…
So far so good on my challenge month. Training and mat class yesterday (training is a lot of flexibility, balance and stretching) - today I cross-trained with the elliptical and will do TRX this afternoon. Oh, and took the pups for their morning walk. Planning to run tomorrow. So far, so good.
I had a good 5 mile run last night. I didn’t want to go because it has gotten so cold, but then I came to my senses and realized that I had run in much, much colder temps all winter so that wasn’t much of an excuse. And it turned out to be just fine. Tonight is running club and we’re meeting at the park with the killer hills so it will be one mile loops of the killer hills. That’s OK, we don’t have many in our area, mostly just rolling hills, so it is good to train on the real hills occasionally.
abasket - I sure hope this resolves your issues. I didn’t realize that Alta doesn’t have HR. Although the HR isn’t all that reliable, I like having the info.
sabaray - glad you are doing well with your challenge month!
