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TOPIC: Lupus.... maybe

Lupus.... maybe 4 years 4 months ago #44895

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
  • Posts: 227
  • Thank you received: 39
What a day :cheer: I saw the new Doctor for the third time today – finally getting somewhere.

She ran celiac test along with a food allergy test last time. We also did an abdominal CAT scan and chest X-ray to start somewhere. (I had a back x-ray done in way back in March that she and the chiropractor actually looked at)

So the results are... Not Degenerative disc… I have not one but two non-fused lumbar/sacra vertebra, which makes for a very unstable spine (I was diagnosed with scoliosis when I was 12yrs old) – that with long term Prednisone use has taken its toll – major reason for back pain.

As for pain under left ribs – still working on it may be a nerve growth along the rib (forgot what she called it) she has ruled out spleen issues for now.

Now the kicker – Food allergies/celiac - I am not a celiac :woohoo: YEAH ……..however I am allergic to many of the foods I enjoy :(  “all dairy” (not lactose intolerant actually all dairy) – eggs – bananas – pineapple and broccoli. Yesterday alone I had yogurt, cheddar cheese, a banana, broccoli and milk :unsure:

So, I know that avoiding things I am allergic to will not “cure” my ITP however it may slow down my immune system enough to make a difference, only time will tell.

I am very glad it is not Lupus and at least now I have something to work on that may actually help 

Cindy Ann

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Lupus.... maybe 4 years 4 months ago #44898

  • 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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Good for you, Cindy...sounds like you are getting somewhere. It makes a huge difference to have a doctor who will actually try to make a diagnosis instead of blindly prescribing drugs!

Those foods you mentioned have been my staples lately too. It would be hard to live without them...I eat them every day. It's so funny that you said the exact same things that I eat every day. I've never heard of being allergic to broccoli.

What can they do for your back?

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Lupus.... maybe 4 years 4 months ago #44917

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
  • Posts: 227
  • Thank you received: 39
Yeah, it is funny how many things have "Dairy" in them :( I am really going to have to change how I eat - can't even cook with butter :unsure: and eggs are in pasta, some breads, most baked goods, EggNogg :angry: the list goes on and on and what about Broccoli - I eat (or should I say ate) it at least twice a week.

I am going to have CBC's drawn at certain points while I do the specific food trials and see what happens with my platelets (I think they will improve due to not taxing my immune system so much - we will see)

As for my back - The doctor talked about fuseing - I don't know that I am ready for that yet - I will have to think long and hard before going under the knife :S

Cindy Ann

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Lupus.... maybe 4 years 4 months ago #44919

  • 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
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
I was tested for food allergies when I was a teenager. I always had eczema. I was told that I was also allergic to eggs, chocolate, dog dander, etc...I don't even remember the list. I didn't care though and ate those things anyway. I'm sure there are more things on the list by now, and I am kind of curious.

There are so many studies about how bad dairy is for people, so I try to stay away from most of that anyway....except for eggs and yogurt that I eat once in a while. I am always stuffy and always wanted to get to the bottom of that, but that has been at the bottom of the list.

I hope avoiding those things help...let me know how it goes.

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Lupus.... maybe 4 years 3 months ago #45408

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
  • Posts: 227
  • Thank you received: 39
So,

Deep down I was really hoping that finding out about my food allergies and abstaining from them that my platelets would maybe be kind enough as to rise – instead they have fallen.

11/7 found out about food allergies
11/10 40k platelets
11/18 27k platelets
11/25 22k platelets
12/3 30k platelets (I hope, I hope, I hope – going the right direction )
12/9 24k platelets (oh nooooo wrong way :huh: )

Maybe it takes longer - who knows , I feel better physically (the back is still another issue, looks like surgery in the future) so there is a benefit to abstaining – but I could really use a break with the platelet count :(

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Lupus.... maybe 4 years 3 months ago #45409

  • 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
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
CindyAnn - It could take a long time to see any benefits with a diet change. At the very least, you do feel better so that counts big time! Your counts are fluctuating, but seem to be fairly stable in a safe range. Let's just hope they stay that way!

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Lupus.... maybe 4 years 1 week ago #47247

  • CindyAnn
  • Offline
  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
  • Posts: 227
  • Thank you received: 39
It's been a while so I thought I would update.

I have stuck to avoiding the foods I am allergic to and that seems to help with how I feel and finally the prednisone weight is slowly but consitantly coming off - but not the platlet count :( holding steady at 25k - 35k for the last three months so I will take stable and run with it.

As for the back - on Feb 23 after finally getting a MRI on my spine I ended up having steriod shots on either side of my L5/S1 joint and WOW what a difference - I can move again :woohoo:

The shots can last anywhere from short term (one month) to years - I'll take the years please!!

Thank you all for letting me vent.

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Lupus.... maybe 4 years 1 week ago #47278

  • 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
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Cindy:

I got steroid shots in my neck muscles (TPI injections) for two years. It did help a lot. I'd get about 12 of them every 6 weeks. That kept me going until I got the stenosis diagnosis and had surgery. It can be a good way to manage those kinds of problems. Mine would only last from a few days to a few weeks though, but the good thing is, you can keep having them.

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