Update: I have my diagnosis :(

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/21/2009 8:02 PM (GMT -7)   
Just got back from seeing my rheumatologist this afternoon. I wasn't supposed to see him until next week but in desperation I emailed him about my symptoms yesterday. I've been feeling more and more like I'm going to have to stop working and go on disability. The vertigo and blurry vision make it scary to drive and the brain fog and memory issues make it extremely hard to do my work.

He says that I do have lupus and I'm flaring right now. My hepatologist had just reduced my prednisone from 7 to 5 mg, but my rheumy has now bumped it back up to 7mg. He did start me on Plaquenil about 3 weeks ago, but says it takes a long time to start working.

He also says I do NOT have polymyositis, so that's good news anyway!

Hope everyone is having a pain-free day!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

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


autoimmunediseasesgfliving.blogspot.com


flower woman
Regular Member


Date Joined Oct 2009
Total Posts : 40
   Posted 10/22/2009 3:29 AM (GMT -7)   
Sorry to hear you're hving such a bad time! I just had three months of blurry vision,vertigo like symptoms with brain fog etc etc and i can sympathise with you! take care!
SLE sufferer with APS on plaqanil,mepacrine,pred dose dependant on flares,asprin,omeprazole,calcichew D2,fluoxetine and various pain meds.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/22/2009 6:59 AM (GMT -7)   
JoAnn, sorry that you are going through so much. Now you know it is lupus, getting a
dx is sometimes half the battle. Your rhuemy can now work on finding the right med
combo for you. The bump up in the prednisone should help some.

Plaquenil does take awhile to build up in your system before it kicks in. It took about 5
months before I had any noticible change. I am no longer on it, my rheumy put me on
Methotrexate. Make sure you follow through on having eye exams every six months.
If you haven't already you should have a baseline exam.

Take one day at a time, sending lots of gentle hugs!

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/22/2009 8:38 AM (GMT -7)   
Thanks flower woman and Robin! I am glad to have an actual diagnosis....it's better than being in limbo not knowing exactly what's wrong.

I'm very lucky in that I'm able to work from home much of the time. I'm still exploring the idea of going on disability, but if I start to feel better with the increase in prednisone I may not need to do that yet.

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

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


autoimmunediseasesgfliving.blogspot.com


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/22/2009 4:23 PM (GMT -7)   
Hi JoAnn ((((hugs))))) I am sorry to hear you have lupus too but it's good to know what you're up against. Yes, Plaq can take months to get in your system and start working. On a good note, it helped A LOT with my fatigue, so maybe you will have the same results. I hope the increase in pred gets things under control for you. I am still waiting for this flare to get under control too. Did he blame the vertigo on the lupus flare? I am still having the floating feeling and my MRI was clear so I'm not sure where to go from here, maybe my PCP or see if the pred helps?!?!? Lupus is so unpredictable, I hate it!

Praying you feel better soon!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/22/2009 11:51 PM (GMT -7)   
Thanks for the hugs and prayers Stacie! They are very much appreciated!

You know, I think I overwhelmed my rheumy with my long list of symptoms, because I spent a couple of days writing down everything I could think of, then sent it to him in an email because I always, always forget to tell him SOMETHING important during every appointment. With the list plus everything else I had to say it must have been 4 pages long! LOL!

We did discuss some of the symptoms but not all, and when I asked him about the muscle problems I've been having (which I really thought might be polymyositis), he asked me to push up against his hand with my arm and said, "no, you're still strong, you don't have polymyositis".

I guess I was just in shock about hearing him say, "yes, you have lupus". Even though I was more than half expecting it. I do hope that the prednisone increase helps.

I will be seeing him again in 3 weeks, so will ask him then about the vertigo and the "balloon-head" feeling. Actually, I will ask my neurologist about it first, since I'm seeing him next week. I'll make a note to myself to ask or I might forget again. I really do have brain fog! :)

I do hope that your flare is over soon...sorry to hear that you're still feeling "floaty" too. You're in my thoughts and prayers!

(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

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


autoimmunediseasesgfliving.blogspot.com


flower woman
Regular Member


Date Joined Oct 2009
Total Posts : 40
   Posted 10/23/2009 2:02 AM (GMT -7)   
No doubt about it,we deffinately feel so much better once we get a diagnosis and though it's not a nice thing "Lupus"you can start to read all about it and to a degree help yourself an see the signs when a flare is coming and we all hate to take the predisalone but i'd have no life without it....i was left to suffer the vertigo and double vission for about a year it fluctuated and i thought nobody believed me for ages cos i was passed arround from nuerologist to eye specialist from rhuematology! I had already been suffering whith severe arthritic pain mostly in my knees and wrists and had a history which should have given them a clue but still no diagnosis! eventually a few yrs down the line i was very fortunate to be examined by Dr Hughes himself!!! He told me a lot of my probs were to do with the fact that i had APS...and though he did tests for the antibodies which came back negative on examination i was told they were sure i had APS! I was put on asprin to help with the neorological probs and migraine,double vision,numbness etc and asked to get plaqanil up to 400mg a day asap! It all helped and i was getting results in weeks! I have been taking predisalone now for years between 5 and 7 a day! I read though that you dont suffer so much with some nasty side affects if you manage to keep to 5 a day or below which until recently i did....then like a silly girl i got a bit ambitious and decided to wean off! Got down to 3 a day and took it down to 2 and more fool me i've been ill ever since and just cant get that balance back! So if anybody out there dicides to come off the pred or lower the dose even slowly 1mg per month! Dont go too low it's not worth it! I wish i had stayed on 5...Just thought this might be helpfull to know some time!!
SLE sufferer with APS on plaqanil,mepacrine,pred dose dependant on flares,asprin,omeprazole,calcichew D2,fluoxetine and various pain meds.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/23/2009 12:52 PM (GMT -7)   
Hi flower woman...thanks so much for your response.

Wow, you mean Dr. Graham Hughes (St. Thomas' Hospital, London)? The one that "Hughes Syndrome" is named for? That must have been quite an experience....how wonderful that you had access to such a good doctor!

I do agree with you that we have to be careful when tapering down on prednisone or related cortisone-type meds and never taper faster than our doctors say to! It's good to post these tips so that those who are new to such meds are warned about the possible consequences.

I hope you're getting your flare under control and that you feel better soon!

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

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


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 10/23/2009 5:32 PM (GMT -7)   
It's more than "have to be careful" with prednisone -- stopping suddenly or decreasing too fast can cause heart failure!!

Not everyone realizes this, but it's important to note how severe a problem this can be. In fact, I wear a medical bracelet with "prednisone" on it -- very very important if I end up somewhere alone and some horrid accident were to occur -- many of the common methods used to restart a heart do the opposite of usual when you have prednisone on board. Same with other kinds of emergency medications you may need.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/23/2009 5:37 PM (GMT -7)   
Thanks for clarifying Lynnwood! An Addisonian crisis is definitely an extremely serious situation.
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

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


autoimmunediseasesgfliving.blogspot.com

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 10:58 AM (GMT -7)
There are a total of 2,732,122 posts in 300,996 threads.
View Active Threads


Who's Online
This forum has 151159 registered members. Please welcome our newest member, webers.
247 Guest(s), 9 Registered Member(s) are currently online.  Details
Wdan, Michael_T, sararectenwald1, ChickNorris, rockyfords, Jingles1234, Kmuth, MollieMae, minnietoty


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer