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RA + Lupus? + ITP or Doctor fight

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14 years 2 months ago #17107 by AzThumper
RA + Lupus? + ITP or Doctor fight was created by AzThumper
So here I go yet again with one doctor seeming to have run into a wall that seems to fall on me. To explain better, my current hematologists (which by my last count was number 5, have to love insurance don’t we) was total confused about me and my test results that are all over the place. So after a year of confusing this hematologist, he does the right thing and tries to find someone more specialized in my unknown platelet issue.

So the magic doctor (not the hematologists who gave up, it was my new primary care doctor) found the big cheese in my state that is a specialist with platelet disorders. This was hampered by my having the “bad” insurance (which by the way was not my choice, I was forced to get his when I was finally officially declared disabled. Another long sad story.)

So insurance struck down several doctors and just common sense struck down a few others. My hematologist office was sort of expecting me to come up with tens of thousands of dollars out of my pocket to see someone in far off states at my cost (which being on disability and having a family of five kids, means I have no money.) I had to also remind them that a legally blind person cannot drive, so that adds on the expense of someone to transport me and such. So eventually my new primary care doctor, not my hematologist finds the local (within the same state) specialist. My new wife, last one bad news (another long bad story) takes time off of work on her birthday week to drive me to see.Yeah! Finally one battle won!

So I go to the big cheese specialist that my insurance can cover and am told to go onto Rituximab. This was after discussion and research on my bible of tests and the like from the hematologist. This is after yet another twist my insurance never authorized any blood work to be done by him or his facility! So I am back to my primary care doctor who does all the stuff (like put down diagnosis of what I am experiencing) so I can get the local hospital to do all these nifty tests and slides. Now really what idiot at the insurance company said its ok for me to see this hematologist, but NOT authorize any blood work?!?!?

So then a few weeks pass since my visit to the big cheese and he has the labs, so I was expecting a call from my local hematologists on what was next. So another few weeks pass, and I have to pester the hematologists to get this rituximab treatment started or at least a visit with him to fill him in or just to go over the prep and what not for the treatment. My primary care has all the labs already, but I finally get a call back from the hematologist telling me they don’t have the big cheeses chart notes. Really?! What in world is happening?

So since hematologist seem to always have the dual parasite of being oncologists, he is booked up, so I have to wait even longer to see him. This is of course after calling his office for weeks to get some sort of response, but only get the old “well you just went for a consult, we can’t schedule you” or the better yet “you went for just a consult and not orders.” So now that I am finally scheduled to see my hematologist after my insistence to get an appointment, I am really fired up. If hematologist has given up (or just confused with my labs and my weird responses from treatment) and tries to find someone above him (someone more into the platelet issue not just a generic hemo/onco doctor) and then finds one, why question his recommendations? I mean what the entire exercise was for, to just run up more insurance bills and have me call his office for the kicks? Yeah, I do not believe the "we don't have chart notes" excuse.

At this point my labs are coming back with greater markers for Lupus and now almost positively RA. Well that is a relief that maybe I have something they can deal with (yes at this point I welcome any disease that has a name and some idea on how to deal with it.) My quality of life is shot, and at this point I am ready for anything to just get some help. I was told today that I am not to go on the Plaquinal, and I have to wait to see the hematologist. My guess is that he is afraid that I may be the person who reacts negatively to quinine based medications, at this point I have no idea if I am or not.

On the scale for how many symptoms/effects of possible Lupus I score a firm 6 disorders or symptoms. Of course the blood testing is still pending, but at this point I place so little trust in these tests. I mean there is really no definitive test as far as my doctors have told me that say you are or are not, which unsurprisingly is so much like ITP.

So with even more tests pending (I am becoming drained from all these damn tests), is this common to have your doctors having such battles with what to treat you with? I played the wait and see approach for over 30 years now, with the brief bouts of we must work on this and then drop it again doctor vs. insurance battles (that was my last trip here to this board with surprising the same results.)

At this point I am just so frustrated that my local hematologist. It seems like either he or his office is so scared or just unsure of what to do. I mean if your doctor says it is above his or her understanding and they refer you out, should they listen to the person or persons they send you out to? What magic key or phrase or test must be given for someone to finally say let’s do this next?

Has anyone just had enough and told their doctors to just suck it up and go for it? Rituximab is not an easy choice, but neither is suffering with other disorders or issues or whatever that I am being told can be helped if they get my ITP back in a safe zone? Safe by the way is totally variable and I have been told by to many hematologists at this point to give little if no confidence in any counts. I bleed horribly with counts in the high 70s and now just leak constantly in the 50s from everywhere (which is another story of specialist playing the blame ITP not my specialty issue.). Sorry for the rantyness of this post, but what is everyone else’s experiences or suggestions on what to do next? I can’t force anyone to do anything, but isn’t about time that someone just does something or at least let another doctor try something. Suffering in frustrated silence does not work anymore.

AzThumper
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 months ago #17124 by Sandi
Replied by Sandi on topic Re: RA + Lupus? + ITP or Doctor fight
Hey Thumper - quite a situation there. I don't have much advice. Getting a diagnosis doesn't always mean that things will get better. I can attest to that. At this point though, Rituxan would be a good place to start. I hope you get the go head on that soon. Keep pestering. The squeaky wheel......
The following user(s) said Thank You: AzThumper
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14 years 2 months ago #17141 by AzThumper
Replied by AzThumper on topic Re: RA + Lupus? + ITP or Doctor fight
Sandi,

I wanted to thank you for your reply. I trying to be that squeaky wheel again and hope this time something sticks. It is just such a journey with all these doctors wanting to blame ITP and then are afraid to treat ITP. It is so sad that each specialist wants to blame ITP and then the hemo says no its not ITP, and I get stuck in the middle. Well I guess that's why its called "practicing" medicine I guess.

AzThumper
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14 years 2 months ago #17152 by specialk16
Replied by specialk16 on topic Re: RA + Lupus? + ITP or Doctor fight
AZthumper, you have a lot going on. I must say that your post did make me smile a bit, but then frown but smile once more. Keep fighting the good fight. We all have to be our own advocates when it comes to our health. I am glad that you are not giving up! Take care.

Kasha
MCTD (Lupus/Raynauds), Sjogrens, ITP
Plaquenil 400 mgs
Prednisone 10 mgs
Imuran 50 mgs
Rituxan 2005 and 2008 (can't take anymore, body rejected it)
The following user(s) said Thank You: AzThumper
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14 years 2 months ago #17396 by Flashmom
Replied by Flashmom on topic Re: RA + Lupus? + ITP or Doctor fight
Hi there. I have lupus and ITP as well. I have not responded to treatments but have heard a lot of people have success with rituxan. It's worth a try if your insurance would cover it.
The following user(s) said Thank You: AzThumper
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14 years 2 months ago #17404 by AzThumper
Replied by AzThumper on topic Re: RA + Lupus? + ITP or Doctor fight
Thanks! I am awaiting insurance company approval now. I guess it is given to you once a week for four weeks and it takes six hours to administer. That is a long time. But thank you all for the support, my hemo told me that the rituxian may even be beneficial for my RA. I get to see my new RA doctor tomorrow.

AzThumper
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 months ago #17405 by Sandi
Replied by Sandi on topic Re: RA + Lupus? + ITP or Doctor fight
Yes, you may kill two birds with one stone. Good luck!

I thought the time went fast. I was dopey from the pre-meds and basically just stared at a book the whole time. Time flew since I lacked a concept of time.
The following user(s) said Thank You: AzThumper
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14 years 3 weeks ago #18380 by AzThumper
Replied by AzThumper on topic Like a lead ballon
So I have completed my four weeks of Rituxian and got the weekly blood work and went from 53K to 56K then 60K then back to 53K. So that was total uneventful. So does this stuff have to like fester awhile or something? At this point my counts show no change, or am I just jumping the gun? I get to see my hemo next month and hope to have some better numbers...of course that will happen right after I win the lotto to. Drat...well Rituxian...I gave you a shot..ok it was more like a 6 hour IV but you get the drift.

Saddened,
AzThumper
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 weeks ago #18381 by Sandi
Replied by Sandi on topic Re: Like a lead ballon
Thumper:

Yes, Rituxan takes some time to brew. Most people see results between 4 to 12 weeks after the last infusion. I hope you have some luck man! Don't give up just yet.
The following user(s) said Thank You: AzThumper
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14 years 3 weeks ago #18384 by AzThumper
Replied by AzThumper on topic Re: Like a lead ballon
Thank you for the information. I do hope something happens, like me winning the lotto :P I shall await my next doctors appointment to see how things are doing. But man oh man..that treatment was expensive..over 16,000 per treatment..I better get something for all that...like winning lotto numbers...yeah... :D

AzThumper
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14 years 3 weeks ago #18392 by Rhiannon
Replied by Rhiannon on topic Re: RA + Lupus? + ITP or Doctor fight
Hey AZThumper... yes I smiled too when remembering the mild year I have had this year.

I get on really well with heamatology department and just recommended you should all travel to sheffield in England because on the whole the experience been positive. Even this year. The previous constultant retired and when my platelets dropped boxing day I begged to be allowed home in time for new year trip which meant they gave me just prednisolone and that worked because the count went up to 410.

To cut the long story short through my own folly or their's? They didn't give me IVIG how I have always had it in the past and my platelets have dropped 3 times including May and only had 8 weeks off steroids throughout this whole year....

Does one tell a doc he is doing it wrong....? Especially as he was on leave at the time they quickly gave it. Again I needed to be out for a course presentation and they got it done it time. But in the past I had 60mg steroids along with IVIG. This time I went to day ward a week later (knowing my count was dropping but knew i had that appointment) my count was 5.

It may be nothing to do with how things are administered and just be a coincidence. They dropped last year to 37 in August but recovered on their own. Till Dec. It first time I had ITP since Septicemia (2006) so something may have altered in my own system anyways. I been diagnosed with ITP since 1994 so I know my own pattern well enough. I only usually experience it and all gone in a fortnight. (oops americans don't have fortnights I seem to remember - two weeks)
But yes I do feel frustrated a little bit because the IVIG wasn't given with steroids.... They restarted the steroids when the count was back down to 5. Am down to 5mg now and appointment on monday. I had 4 doses of rituximab. one shall see. But yes I understand you with the doc fight and I told myself well I am in no danger and my relationship with the whole team is good and want to keep that rather than try and tell them what to do - unless I am asked for advice etc...

Good luck and I learned a lot about LUPUS on here though know nothing about it otherwise.
The following user(s) said Thank You: AzThumper
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14 years 3 weeks ago #18397 by AzThumper
Replied by AzThumper on topic Re: RA + Lupus? + ITP or Doctor fight
Thank you Rhiannon for sharing your experiences. Since I have had ITP or whatever since the 1st grade, which is now over 36+ years ago, I also have sort of had a grasp on what my body is doing. I am just hoping to get my doctors on the same page. But I do find that if I win the lotto, I am sure ITP or not, I will have much more fun...hehe :P
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14 years 3 weeks ago #18398 by Rhiannon
Replied by Rhiannon on topic Re: RA + Lupus? + ITP or Doctor fight
though having posted that, I got that feeling I might be going down with a cold. Not sure what if I am meant to be ringing the ward as last rituximab was not friday just gone but the friday before that....

I have an outpatients appointment anyway on monday and in that time will tell me if I really have a cold or is it just a quick snuffle. Unless advice on here tells me to clearly ring the ward. It only that undercurrent feeling pre-cold the prenose and not quite sure about the goosebumps, very very minor. Tomorrow is a busy day as first day back on the teaching assistants course and maths so want to get through them as not having a good record at school as wasn't there monday due to shower tray being replaced.

So what does one do having had rituximab recently? I not got temp at all and would ring them then for their advice. It a 2 hour journey and an 1 hour waiting time there at the minimum....