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Discussion Starter #1
Well I have posted before my 26 yr.old daughter went to rhumy,some blood work came back pos. he put her on plaquniel 400mg a day but doesn't think it is lupus thinks it's dctd....Told her to come back in 6mos.Her GP has done blood work the past 2 mos and her platelets are low around 45.000 so she has made her a appointment with an oncologist(spelled wrong) Does this go along with lupus?I think her GP should have called her rhumy before sending her to oncologist,her rhumy is in another town.I am so confused and sheworks but stas so tired and has a 6 yr.old son and does not live with us and is divorced and ex is in hiding doesn't want to pay the child support.:mad:
 

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Hi Sharon

I have had low platelets quite often in blood tests since my diagnosis. GP alerted my rheumy but at appts I have never been told it is a major concern. I realise this is not much help to you in your instance but it does show that I have low platelets yet an oncologist has not been involved.

There is mention of SLE and low platelets at
http://www.netdoctor.co.uk/diseases/facts/thrombocytopenia.htm

I do wonder if your GP has contacted your daughter's rheumy as it appears that autoimmune processes can cause this low platelet problem and it might be the first call before oncology. Is there anything else in her bloods that has alerted the doc do you think?

I don't know what DCTD is so I cannot comment on that.

Hope your daughter gets a bit less stress to deal with soon.

Love
Sara
 

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Discussion Starter #3
Dtdc

I may have it abreveated wrong and can't spell for crap .They say maybe diferentuated connected tissue diesase or maybe undiferenturated and not lupus but alot of her blood work is pos.Also another rumy hd said fibrowich I have but I think she has lupus.Sh did have a problem with her platelets when she was pg. but after predisone and then treatment for H-ploria(not spelled right) they got ok.I tried to get her GP to give her the meds for h-ploria but she wouldn't its just amoxicillin and previcide.
 

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Discussion Starter #4
plaquinel

Well after doing some searching on the internet I did find where low platelets can be side effect of plaquniel
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Hi again

I would try and get in touch with the rheumy and discuss this. Or phone his/her secretary and leave a message. That might put your mind at rest.

Sara
x
 

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Discussion Starter #6
rhuemy tomorrow low platelets

My daughter called her rhumey friday and left a message about her platelets being low and that her gp made her appintment with oncologist.Her rhumeys nurse called today and he wants to see her they had a cancelation for tomorrow so we will know more after that.Wished he would give her something for the awlful tiredness.The plaquniel is making her tummy pain bad so I told her to drop it down to 300 a day .Doc. said 400 a day but she couldn't do it and was doing 200 then after 5 weeks went to 400mg.Will post what the rhumey says tomorrow.
 

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Thanks for letting us know Sharon, I was wondering how things were going.

Good luck for your daughter tomorrow.

Love
Sara
 

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The best of luck tomorrow for your daughter Sharon. Its great she has the appointment so quick. Poor girl. She must be miserable with all this going on and having to look after her little son.

Hopefully they can get to the bottom of things.

Please let us know how she is.

Luv n stuff
Joan:rose:
 

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Good Luck wishes to your daughter Sharon.
Just to mention that Quinacrine might be a more tolerable alternative to the Plaquenil and it is especially good at energising. But of course the fatigue often gets better when the disease is fully controlled which hers clearly isn't yet.

All the best

Clare
 

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Interestingly... on wikipedia there is now a mention about treating a H. Pylori infection raising people's platelets! I hope you mention that problem to the rheumy and try to get treatment for that and maybe that alone will be enough to raise the platelets. It's certainly worth a shot.

Here's the relevant text:
(from this link: http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura)
H. pylori eradication

Researchers in Japan (including Ryugo Sato, Oita University) and Italy (including Massimo Franchini, University of Verona) have found a possible connection between H. pylori (Helicobacter pylori) infection and ITP. Some patients given antibiotic treatment to eradicate the bacterial infection have had their platelet count increase dramatically.[citation needed]
 

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Discussion Starter #12
Well I am not happy....my daughters rhumey said the drop in platelets are prob. due to her ITP that she had 6 years ago and gave her nothing for it so I guess she will go on to the oncologist the 12th.He told her to get the brand name plaquniel and practice with the dosage as to what she can handle and not hurt her tummy too bad ,said her ana was still high but he still will not give DX of lupus,also told her to take 1000 mg of vitamin D a day that hers was a bit low.He gave her nothing for the fatigue and nothing for pain but her GP has her on loratab 5s 3x a day if needed.I was hoping he would give her prednisone low dose for a couple of weeks but he didn't. Thanks to everyone for careing and I am so glad I can come here and get educated on this lupus thing from those that have it.I just wish doctors would lok at these sites.
 
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