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  #26  
Old Wed Feb 22, 2023, 08:21 AM
Sally C Sally C is offline
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Location: Chesterfield, Va.
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Hi Kazp,
Are you by chance taking Vancomycin? That can cause Red Man's Syndrome.
All the best,
Sally
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  #27  
Old Wed Feb 22, 2023, 08:39 PM
kazp kazp is offline
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No, thankfully, I am completely medication free at the moment, apart from b12, vitamin d and iron supplements.

I'll have to go see what red man's syndrome is now. It sounds wild
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  #28  
Old Wed Feb 22, 2023, 09:19 PM
kazp kazp is offline
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I'll elaborate on these red cheeks a little. I noticed in 2019, the last time I actually took a decent photo of myself, that my cheeks looked flushed. I didn't think too much of it as it was the start of winter and I had been warming up in the mid morning sun, and I was also perimenopausal. These cheeks just slowly became a thing, especially the last few years where I'm relieved I am not heavily social, or work out of the home because they're just so ....there. I mentioned them here and there to my gp but I think we both dismissed it as menopause. I'm a few years over that now and they're worse than ever. I don't always feel them, unless I touch my face, so they're not part of a hot flash or anything. If I'm in a stuffy room or wearing a mask, I can feel them coming on. From Nov, we put up blockout curtains and I've avoided going outside in peak hours where I can. If it's hot or stuffy, I use the fan and dress down to a crop or tank top. It took a few months but now I only have them on really hot days in the afternoon and for a short time. My last really bad cheeks day was Christmas day, where even though under cover, it was outside and we did a bit of driving. So there's no flashing, no sweating, nothing else, just this sunburn in a ski mask with too much outdoor time. Gosh I'm a babe! Lol oh and that original photo, which I had originally always thought was after my blown up hand that started all of this, was actually 3 weeks before, according to the pic data, so not long before the fatigue hit too.
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  #29  
Old Wed Feb 22, 2023, 09:31 PM
Sally C Sally C is offline
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Red Man is bizarre. My husband was red from head to toe - all because of the Vancomycin. Another time they tried it against my wishes - saying it was infused too quickly. They started slowly and in 5 minutes he was beet red again.
I wish you well!!
Sally
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  #30  
Old Thu Feb 23, 2023, 03:45 AM
kazp kazp is offline
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Wow, that's intense and thank you, best to you also
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  #31  
Old Fri Feb 24, 2023, 09:43 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by kazp View Post
Hi Hopeful

No I haven't and I also haven't heard anything about my pancreas other than it isn't swollen, so I will check that out. I have to see my doctor sooner rather than later for my annual gallbladder ultrasound, and a few other things, and we will no doubt discuss what to do next. He did mention genetic blood tests a bit ago, but they're expensive in this country and private insurance doesn't cover much. I will discuss it a little more with him. I'm a bit defeated after the rheumatologist visit and how dismissive he was because it wasn't in his lane. I mean, it's not normal to sit in a crop top besides a fan in a room full of blockout curtains to avoid looking like I've been sunburned in a ski mask, but he didn't even bat an eyelid lol oh well. I'll pop in after I see my nice doctor if he has anything to add.

Edited to add....looking into this SDS and it is ringing a bell in that my haematologist may have tested me for this over the while, or I've read about it along the way. I'll definitely chase it up because it certainly does resonate, doesn't it
Genetic testing is expensive in this country as well! Even if you can't do genetic testing, it may be worthwhile discussing with your doctor whether you can try pancreatic enzymes to see if there is a positive effect. You will know pretty quickly if they work. Perhaps malabsorption issues are contributing to other vitamin/mineral deficiencies and their associated effects. Best of luck!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #32  
Old Tue Feb 28, 2023, 01:01 PM
triumphe64 triumphe64 is offline
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Perhaps it is LGLL.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #33  
Old Wed Mar 1, 2023, 04:07 AM
kazp kazp is offline
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Hi well I hope not, though the symptoms do fit. I don't have positive RA factor or ANA, which seem to have a high percentage, and I didn't see Cd34/117 positive listed, which was listed in my bone marrow biopsy from a few years ago. They have checked for epstein barr, which I have had, but wasn't active at the time of the test.

Thanks so much for all of this knowledge and suggestions. Its my 4th year without a diagnosis and going around in circles, so i really appreciate it.

Last edited by kazp : Wed Mar 1, 2023 at 05:40 AM.
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  #34  
Old Thu Mar 9, 2023, 09:57 PM
kazp kazp is offline
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Smile

Hi ,

I'm back from seeing my Dr, and it was lovely to see his friendly face. We had a good discussion about everything and all of the above, and we're just going to park it in the aplastic anaemia basket, with the option to jump into another basket if any other symptoms prevail, and wait for it to evolve. Hopefully, that takes a long time, and I'm older and greyer than I am now. He wasn't dismissive of absorption or hormones, but said that everything has been going on for a long time, and the clinical symptoms are autoimmune, with or without the blood results to confirm it. So, it's back to watch and wait, and a Monday ultrasound of the gallbladder to see what else has decided to grow in there this past year. Obviously, I'll update if anything interesting happens. .
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  #35  
Old Wed Jul 26, 2023, 02:03 AM
kazp kazp is offline
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Hi everyone I hope everyone is well.

Good news on this end, with my recent checkup being stable. Reds and whites are low, but haem is good and my platelets are kicking goals. My MCV has gone back up to 101, so that's still a thing. My silly thyroid is being a pain again and is back at .4 for the TSH, and is no doubt planning to keep on enjoying its time in subclinical thyroid land as we head into summer. Reticulocytes are still low at 19, and this is the first time that they haven't moved into the 20's after dipping into the teens. However, she's bored with me (hooray) and I can relax into an annual visit now. Obviously, I would go back earlier if anything changes, but hopefully, I just keep plodding along.

She did have a few interesting comments as we chatted away. She commented that it's all very 'seasonal', which I have to agree with, and that they're noticing that because people are being tested younger, they're learning of these things before their time. I'm not sure how that works as this all came about because my right hand blew up 4 years ago, and we still don't know why. I also had vitamin b12 macrocytosis 20 years ago, which was rectified with the supplement I still take daily. Who knows, I don't care because I don't have to go back for a year. Yay!

On the symptom side of things - I'm like a slowly deflating balloon. I'v had to drop my exercise back to just walking and yoga, and I need so much more sleep. My arthritis is bad and I still look like I'm sunburned in a ski mask, but do not care. I still enjoy my time outdoors with my dogs in big hats and glasses, and wear that skin mask with pride.

I guess I'll leave this as is unless anything exciting happens!
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