The ongoing journey

[renidrag]

Met with Dr. Monach, Rheumy, yesterday. Bloods from three months ago were better but inflammation levels still up. Talked about pred dose, leaving it up to me. The problem I have is the pred doesn't touch the neuropathy pain. I don't think upping the dose will help. Aside from that he seemed very anxious to get my Vena Cava Filter removed so I can get off Warfarin. He is setting up an appointment with VCF guy so we will go from three. Had more bloods drawn and noticed testing Anca, both, this time. Don't usually write this much, thought I would let you know. Dentist today, 16-18" of snow between now and Tuesday. We really have no place to put, driveway getting very narrow. Best to all.
Dale

[Debbie C]

Hey Dale..one of those hands in your avatar is mine. I HATE WINTER !!!!! I used to go to Boston often. My ex( now deceased) husband was from Revere,
I loved it there and the lobster rolls !!Well back to you ! it sounds like you are inproving..at least you will be off warfarin. Good luck with the results.

[Pete]

Hi Dale,

Has Lyrica been mentioned as treatment for your neuropathy? At any rate, I hope you get some relief soon.

Hope the snow doesn't mess things up too much this time. I also will claim one of the hands in your avatar.

[renidrag]

Lyrica was mentioned, would rather be where I am than go thru side effects. Met a man from a town over from me with RA, swears by it though.
Dale

[mishb]

The inflammation part is not so good Dale, but getting off warfarin sounds like excellent news. I hope it can be done.

I would send some sun across to you to melt the snow, but we aren't having much sun at the moment.

Keep us posted on how things go.

[annekat]

Dale, it sounds like your doc talks to you about your bloodwork results 3 months after the test? Mine was doing that, too, which made me feel like, well what about NOW? And then I'd get more blood drawn and talk about it at my appointment 2 or 3 months later, unless there was anything alarming, in which case he'd call me, which never happened. So now, I arrange with his office to ask for a blood draw about a week before my appointment. So when we talk about the results, it isn't old business. This has worked out well, as last time the news was that my inflammation level was down to normal, and I'm glad to have found that out then instead of waiting. Possibly, I misunderstood about how your doc does it, as I know he's known as a WG specialist, and mine isn't by a long shot.

[renidrag]

Like that idea, yes he would contact me if a problem. I don't really blame him though having probably
inherited most of Merckel's patients as well.
Dale

[annekat]

Like that idea, yes he would contact me if a problem. I don't really blame him though having probably
inherited most of Merckel's patients as well.
Dale Well, maybe it isn't unusual to do it that way in a busy office. What bugged me even more was during time periods where, for whatever reason, he was having me come in every 2 months instead of 3. But he still only had me get bloodwork right after the appointment, and if it hadn't been 3 months yet, I wouldn't get it until the next appointment, which would mean a 4 month interval would pass instead of 3, and we'd still be talking about 4 month old bloodwork during the appointment. That routine seemed irresponsible and lazy to me. It could still happen, if he decided to see me in 2 month intervals again, but at least now whenever I get the tests, it'll be before instead of after an appointment, so I'll know the results right away. It wasn't hard to persuade him to do it that way, and his nurse and I are the ones doing the work of coordinating it with the lab.

[renidrag]

I am going to take that approach at next appt. Great idea, thank you.
Dale

[LisaMac]

Me too, it makes more sense to have current labs at each appointment. You guys have also inspired me to ask for a copy of my labs at each appointment. That way I can track how I feel with what my labs are saying. I'm so happy to have found you all! I start back on Rtx on the 18th as I am without a doubt in a flare.

[Alias]

Good example of how we have to be our own advocates. I thought I could count on providers to contact me between visits if something in my monthly labs was amiss, but on two occasions I've found results that were significantly out of range by reviewing them on line. In both cases my contacts with the doc resulted in medication adjustments. Since I only see the doc every three months, it's possible I would have waited almost three months without hearing anything. Or... maybe they just had not gotten around to calling me. In any case, if you have the ability to access your results and track them over time it can add to your understanding of what's "normal" in your situation and when you should ask questions. I have blood drawn at two hospitals in Alaska and Washington; both of them allow patients to sign up for on line access to lab results. If that's not possible, then timing the labs the way Anne described might be a good idea.

[annekat]

The last I knew, the hospital where I get the blood drawn doesn't offer online viewing of test results. When I asked someone, I forget whom, I was told it had something to do with patient security. That sounds like BS, since so many places do offer this, and there are ways to ensure security with passwords and such. Whatever. I think I can still get hard copies of all my tests at the records office, but I don't know how soon after the test. So I just remember to either get a copy at my doc's office the day I'm there, or have the nurse send me one.

[mrtmeo]

The last I knew, the hospital where I get the blood drawn doesn't offer online viewing of test results. When I asked someone, I forget whom, I was told it had something to do with patient security. That sounds like BS, since so many places do offer this, and there are ways to ensure security with passwords and such. Whatever. I think I can still get hard copies of all my tests at the records office, but I don't know how soon after the test. So I just remember to either get a copy at my doc's office the day I'm there, or have the nurse send me one.
Hi Anne,
Have you checked to see if there is a mychart for your hospital?
You are right. They were probably blowing you off because if it were such a security risk, other hospitals would not be doing it.

[annekat]

Hi Anne,
Have you checked to see if there is a mychart for your hospital?
You are right. They were probably blowing you off because if it were such a security risk, other hospitals would not be doing it. I haven't checked lately. This was some time ago that I asked, and possibly they were still in the process of getting it set up. Whoever told me that was likely just giving me a pat answer when she really didn't know what was going on. I'll check the hospital website again, and I probably need to find the records office so I can just go in there and talk to them in person.

[renidrag]

I should check that also, when I was being seen at Mass General they had a site called "something partner" where all test results were posted to your ( my) account. Back in 2010.

[renidrag]

Reduced down pred today to zero. I felt the negatives outweighed the positives. Will deal with pain.
Dale

[annekat]

Hi Anne,
Have you checked to see if there is a mychart for your hospital?
I checked, my hospital uses a different system called My Health Record run by Relay Health. I started registering for it but it looks like it will take some time. It looks like most of the hospitals and clinics around here do use My Chart.

[annekat]

Reduced down pred today to zero. I felt the negatives outweighed the positives. Will deal with pain.
Dale Congrats, Dale. I'm trying to get to 10mg. I guess I could handle a little pain, but don't want to have an actual flare. Good luck with it.

[mishb]

Take it easy Dale.

I'm hope things stay good

[mrtmeo]

I checked, my hospital uses a different system called My Health Record run by Relay Health. I started registering for it but it looks like it will take some time. It looks like most of the hospitals and clinics around here do use My Chart.

That's great.
I believe everyone should monitor their blood work because drs are human and can't notice everything.
My mom's nephrologist said her phosphorus levels were good when I asked, but when I checked her chart, he never did the test. He was looking at the prior year's test because it had the same month and day she was in the hospital, but the prior year.
I had him do the test and her phosphorus level was really high, but a couple months later, it came way down.
According to immunologist, Hal Huggins, a phosphorus level above 4.5 means lots of inflammation.

[RudiK]

Hello Dale, my doc sends me for the blood test one week before the appointment, so it is new at the time we talk. About the neuropathy pain, I used to have pain, burning sensation and some pain, until they prescribed 200mg Gabapentin, which reduced it to almost zero. About reducing Prednisone to zero, be careful, you may be setting yourself up for a nasty relapse. Honestly, I can't believe your doc leaves up to up to take it or not, you two should discuss it, evaluate the pro's and con's, and then decide.
Good luck, I hope it will be good for you.

[renidrag]

I have talked with the Doctor about the prednisone. I told him the weight gain was unacceptable to me. As long as my bloods show little to no change, I would put up with the pain.
Dale

[theredhead]

Me too, it makes more sense to have current labs at each appointment. You guys have also inspired me to ask for a copy of my labs at each appointment. That way I can track how I feel with what my labs are saying. I'm so happy to have found you all! I start back on Rtx on the 18th as I am without a doubt in a flare.

I am in Massachusetts also. I used to see Merkel and his predecessor years ago. I just didn't like them.I am with Dr Delaripa at the Brigham. He is wonderful! I receive my blood test results in the mail one week after having them. I am able to research the #'s on my own and speak to him over the phone.Can't say enough about him.
On another note has anyone tried Orencia? I am being started on it tomorrow. I still take my methotrexate and everything else but am adding this new drug. Thank you for this forum. Good to know we are not alone in our battle.

[MikeG-2012]

Lyrica was mentioned, would rather be where I am than go thru side effects. Met a man from a town over from me with RA, swears by it though.
Dale

Neurontin/Gabapentin might also be a good choice. I haven't had any side effects from it in the two years I've been on it. Now, I am slowly weaning off of it to see if I really need it. My neuropothy has diminished and I think is better/gone. Might have just bee during the bad flare-up that I had it. Time will tell

[theredhead]

Tried gabapentin. Never worked for me. Hopeful this orencia will do it.