Down Again!!!!!

[pudmott]

Thought i was doin so well. Got back to work fpr 4 days, feelin good, gettin on with it. Came home last night felt a bit 'off' then as the night wore on i felt worse. my eyeballs were screaming. massive sinus headache, stuffy nose, feelin weak limbs, so so tired and as has happened all week sweating buckets. i am losing fluid faster than i can replace it. I am sweating profuse;y and still passing urine. i can only drink so much. i have slept most of the day today.

I had to call in sick today. i am so not happy. When is his going to end? I was starting to come off the prednisone but have put it straight back up. I just want to stop sweating. It is winter here. my partner has the heater on in the loungeroom. i cant take enough clothes off. i dont have a temp.


AAAARRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!



Unhappy Pud

[wordnerd]

Awww I'm so sorry you're not feeling well!  I was wondering though if your symptoms might be withdrawl from coming off the prednisone too quickly.  I know I feel miserable when I'm tapering.  I've had weakness, fatigue, mood swings, night sweats, and so on just from the withdrawal and I found when that happened I needed to tapper much more slowly.  Might be a flare, but when you said you were coming off of prednisone that was my first thought...

In any case I'd call you're doctor if you haven't already and let them know what's going on!  I really hope you feel better soon!

Take care!

-Lauren

[pudmott]

Hey thanks Lauren,
I will check with my dr on Monday and stay at 25mg till then. I had a fleeting thought that it may be the prednisone but wasnt sure as this is how i've been feeling for the last 5 weeks.
I think the thing that is most concerning me is how hot i feel and the fact that i cant seem to replace the fluid that im losing. its like i have a direct line from my mouth to the pores of my skin. Water goes in my mouth and straight out my skin. My appetite is gone again and i am so so so tired. i have slept the majority of the day and still feel like i want to sleep.
I am getting teased mercilessly by my neighobur and my partner is annoyed that im sleeping and that is making me just a TAD angry.
Anyway tomorrow is another day

Pud

[Scottietottie]

Hi Pud 

I'm sorry you're feeling so rough. Hopefully raising the Pred again with level things out. I really sympathise with the sweating. I thought I'd cleared menopause - though I never knew whether the sweating was meno, SjS or thyroid but I'd had less of them. All of a sudden the sweats are back with a vengeance. Kinda feel them 'rising' and then the discomfort and fatigue just sweep over. Jumpers are out. I need things I can take off quickly and put back on as things subside. I just really feel like my thermostat's broken.
I've been sleeping a lot too and getting back to work next week is going to be hard. I just don't sleep the same hours as most of the rest of the world!
I wish my appetite had gone. I want to eat a lot but I also want to lose weight - and it's not happeneing!  heaven help me if I was ever put on Pred!

I hope the Pred does its job and you are feeling easier.

Take care - Scottie 

[Sjenny]

Aw Pud,

I'm so sorry you are feeling so badly - hope raising the dose of Prednisone will alleviate some of the misery.

My thermostat is broken too - sweating buckets drains the life out me - keep putting that water in - I know it gets tiresome sipping water constantly.

Hope this passes for you soon,

Sue

[Pooh]

Hi Pud,
I feel so sorry for you with the sweating.  I've been there, done that, don't want to do it again.

I am so sorry you are so miserable with this, but please give your doctor on Monday and let him/her know what is going on.  Losing all that fluid is not good and you may need to get some replacement.  If it were here in the states, I would go for the Gatorade that the sports people drink.  It will replenish and rehydrate the fluids in your system.  

I know I've said this so many times, but when the Autonomic system in our bodies goes haywire, it causes us more problems.  One of which is this profuse sweating.

Please call your doctor and let him/her know about this.

Hugs, Pooh

[lynnmarie219]

Hi Pud,

I'm so sorry that you're feeling so badly and that you have people around that don't understand! Yes.....I agree with the others...please call the doc as soon as you can to insure that you are taken care of asap so you don't lose too many fluids. You don't want to become dehydrated!

Please let us know what the doc says and I hope this passes soon for you and you are back to feeling better!


Lots of hugs to you...........please take good care! 

[Seeker]

Hello pud, isn't a blessing to have such support when things go south?  Hope you will feel better soon.

Seeker


Up and down all around
Some people face trouble with a frown

Those who are special in every way
Face their troubles and stay gay
Then their troubles seem far away
And they can face another day

Anon

[pudmott]

Hey Guys,
Thanks for your support. It's so nice to know i can come here and vent and people will understand.
I am still feeling a bit yuk today but i think im in abetter mindeset to handle it. It is raining today so hopefully i wont feel so hot, but can't guarantee it. My thermostat is definately broken and is stuck on hot. I really hate to think what i'll be like when i reach menopause- thermonuclear reactor.
I think i may be brewing another sinus infection. nose is stuffy got thr taste and all that. I'm getting a sore in my nose and have woken up with another cold sore this morning. Think the candida might be coming back cause i'm feeling all furry in the mouth even tho im still on the fluconazole.
Still all in all i woke up so thats a good thing. I have been drinking gatorade especially at work to replace all the salts and stuff. Mixed with water.

I hope everyone has a good day or good nights sleep.

Pud

[ProudAuntieNWash]

Hi Pud,

Know EXActLY what you are feeling. I am in the same boat today. Hope you feel better soon. ((( Pud ))) Sending you warm thoughts Pud, and a lavender candle.

I was finally starting to feel better. In massive pain toady. Can't hardly walk, heart rate high, just feeling so horrible Just exist today is about all I can function with today. Wish I could cry, but no tears. Eyes are just plain too dry.

Denise

[irish]

pud, Sorry that you are feeling so down again. I can't remember---are you on any of the heavy duty meds like methotrexate etc????So often the docs don't hit the sjogrens hard enough with these meds. I think they are still stuck on the notion that it is dry nose and mouth and not all that serious.

I am wondering how many days you are working cause I know when I was working a lot 4 days in a row would do me in. I did better on 2-3 days in a row with a day off inbetween. Hopefully, you can get rested up and treated for the sinus infection and back on your feed as they say. Have they ever checked your immune system as in the t-cells or IgG subclasses? People with autoimmune disease seem to have their fair share of immune deficiencies and wondering if you are more prone to infections than the average sjoggie. Keep us posted. Irish

[pudmott]

Hey Irish,
As i am working full time i need to work five straight but am looking at moving to a less physically taxing area of nursing. I have had immunology done and i consistently come back with low IgA levels. Noone has been able to tell me what that means though. I am going to ring the immunologist tomorrow and see if i can get in for a review. Currently my meds are
Prednisone 25mg
Fluconazole 200mg
Plaquenil 200mg twice a day
Nexium 40mg
Lexapro 20mg
Mobic 15mg
I am also taking supplements
Flaxseed oil
Digestive enzymes
Acidophilus
Ginger capsules
Lysine.

I rattle in the morning. I don't need breaky i just take my "lollies"

Pud

[quiger]

Hi Pud,

I'm so sorry to hear you are feeling bad again. I sure hope whatever this is will be short lived. I know how much you want to get on with your life and work. Good luck and please keep us posted as to how you are doing.

Hugs,
quiger

[ProudAuntieNWash]

Hi Pud,

I hope you are feeling some better today.

Denise

[pudmott]

So i went to the specialist yesterday and he showed me my Ct scan of my sinuses. NOt pretty let me tell you. And as has been mentioned elsewhere i am now on Clindmycin for three months to try and clear them up. He also increased my prednisone to 37.5mg. I gotta say today i have felt yipee beans i haven felt for a while. I hope something starts to work soon. I go back to work tomorrow so it will be interesting to see if i can go past four days without falling down like a bag of *****.
Can someone jog my brain a bit does plaquenil cause one to have larger than normal amounts of wind. My stomach is so full of air that i need someone to stand on it to squeeze it out. Also im disturbing the air quite a bit and it is a bit more aromatic than normal if you catch my drift (actually i hope you dont, but then again it might clear your sinuses Irish).

I'm just a great big windbag at the moment and there's only so many you can blame on the patients.
Next appointment 12 Sept.

Pud