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Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 1/19/2010 11:34 AM (GMT -6)   
So I went to the allergy specialist and was told I am allergic to just about everything(grasses, molds, foods, weeds, feathers/cats/dogs, etc. Since I cant get allergy shots due to lupus and the allergy meds i tried do not agree with me, my allergist recommended prednisone to control my symptoms. However my rheumy seems to think I only have joint/skin involvement(even though ive had burning pain since ive seen her & have other nervous system symptom) so im not too sure what she will have to say about this. Even though the plaquenil has helped some I know it is not controlling my disease & theres needs to be something added to control my disease process. Im just wanting to know if anyone thinks the prednisone is a good approach to my allergy/lupus perdicament and if anyone thinks I should consult a new rheumy about my care. She has not believed me about the cns lupus possibility and wont do a spinal tap to prove or disprove anything. I am at a stand still here and frustrated. I started back to school today for a new semester and already have a rash from the lights. I am very highly sensitive and it brings out my lupus horribly. I am just rambling now lol Sorry about that I am writing this post with severe brain fog...does it ever end?....ehh...hope you all are well. *hugs* -Lupie Britt

*Lupie Britt*
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/19/2010 11:46 AM (GMT -6)   
Hi Britt,

Prednisone is the gold standard for meds. Most of us are on it, or have been on it. There are negative side effects to it, but in all seriousness, the pros far outweigh the cons in my opinion.

I've been on it for almost 10 years. it has literally saved my life!

Talk to your rheumy about it. If you think you're not getting satisfactory care from your current rheumy, then definitely shop around for a new one.

Good luck!

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 1/19/2010 2:01 PM (GMT -6)   
Prednisone can help with the light sensitivity and neuro symptoms.....I've been on it for almost 2 years now.

Best wishes,
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 1/19/2010 2:55 PM (GMT -6)   
rednisone helps tons with neuro symptoms no idea about allergy ones. I would find a new rheumy. Seriously you aren't happy with the one you have and she obviously isn't listening. Also I would see a neurologist about the neuro symptoms. Sometimes a doctor is afraid to mess with anything that deals with the brain if they aren't a neuro and besides which you may end up needing a neuro if the neuro symptoms progress.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 1/19/2010 3:20 PM (GMT -6)   
Sometimes our brain fog and/or neuropathy isn't indicative of CNS lupus but is a function of lupus inflammation. For me it was found & treated with Cellcept from a Neuropsych exam that very clearly showed I wasn't able to function as previously. (They said I had a 20 point drop in IQ!!)

Nothing showed in MRI and I'm glad nobody mentioned a spinal tap as I probably would have refused it. Spinal taps & back surgery are as frightening to me as brain surgery!

It seems logical to me that prednisone could help control your lupus as well as your allergies, but I am not a doctor and have no experience with having both.

I hope you find a new doctor who can improve your condition soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 1/19/2010 7:46 PM (GMT -6)   
Hi. You sound amazingly like me. Allergic to virtually everything - especially all aspirin products. I have been on several pred "bursts" over the last 10 years when things have gotten out of control, but I do my best to avoid it as much as possible. Last July I started CellCept and it has made a world of difference. Hope you find relief and a rheumy that listens!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 1/21/2010 10:21 AM (GMT -6)   
Hey Britt,
Gosh can I relate to your anguish around the drug therapies.  I've been on prednisone since last March when I was first diagnosed with Lupus and I definitely feel relief with it's daily usage.  My rheumy wants me to get down to alternating it to 5 mgs every other day, but I just don't seem to be able to do it and I worry about the long term effects of the drug, but I also have to weigh the pros and the cons like Ginny said.  I want to live my life without having pain and discomfort on a daily basis for however long that may be and I think that's where we all go with the drug paths that we take.  You have to decide if you are willing to take the chance of longterm side effects versus the quality of life that you have.  For me, I don't think that any of us deserve to live in pain and discomfort daily and miss out on the joys of what life has to offer.  Ginny, you said that you have been on it for 10 years?  What dosage(s) do you take daily to keep your symptoms in check.  I know that we are all supposed to take the minimum that we can but I seem to get the most relief with 7mg a day and everytime I reduce it I am pretty much miserable with the joints.  Good Luck Britt with your decision.  Keep us posted. 
Hanging in There,
DX - lupus and carpal tunnel snydrome
RX - plaquenil, prednisone, anti-inflammatories, prometrium and cenestin ( hormone therapy), darvocet as needed, fish oil, flaxseed oil, calcium, vit d and other vitamins.
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