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Sjogrens Topics => Living With Sjogren's => Topic started by: 4Kids on November 16, 2011, 10:58:34 AM

Title: Feeling better and better
Post by: 4Kids on November 16, 2011, 10:58:34 AM
For two days or maybe a few more, I have woken up with saliva in my mouth.  :o Like almost enough that the dryness isn't even noticable. My parotids feel "picky" lately, meaning they ping especially on the right side. It is like they are starting to work again. My submandibulars are still a bit swollen and firm. They were the hardest when the attack in April hit.

I have been sleeping better lately, and so have my kids, which is often *the* deciding factor.

My nose is fairly normal in that no giant crusty boogers are there, and actual mucuous is blown out. I do often put a squirt or two of Rhinarous spray in it just to keep it moist as it has been dry forever.

My eyes are fine. Sometimes a bit dry but nothing major.

I am less stiff and more flexible.

My hair is coming back, I can see babies around the edges all of a sudden. It has always been thick and healthy and is now dull and half of it went, but if babies are coming around the edges, that means it has started growing which is good. I have been shedding much, much less but still more than before my Mom was sick.

I have been on Plaquinel for 6 weeks. I wonder if that is why. That and apparently the iron supplements are helping. Maybe?

i am not certain, but am very thankful for some normality. I hope it continues.
Title: Re: Feeling better and better
Post by: A66eyroad on November 16, 2011, 11:21:37 AM
I keep saying!  Plaquenil is a miracle!   :D
Title: Re: Feeling better and better
Post by: Joe S. on November 16, 2011, 12:44:24 PM
For your ping, try wearing a polar fleece mumps scarf to keep your glands warm at night.
Title: Re: Feeling better and better
Post by: Meld256 on November 19, 2011, 01:34:03 PM
Hi 4kids,

I missed your post the other day.  I'm so glad you are feeling better!  Isn't it wonderful?!  :D

I've noticed a little saliva upon waking lately, no tongue stuck to the roof of my mouth. I ususally am less stiff and have more energy since starting Plaquenil.  I am thrilled for you and the benefits you've seen.

Keep us updating on any new improvements.  :)
Title: Re: Feeling better and better
Post by: Corella on November 19, 2011, 05:11:45 PM
I have just read your post and wanted to cry - you have no idea of how much it has cheered me up.

I have just been diagnosed with sero neg sjogrens and I have my plaquenil which I will start on Saturday as I have my college graduation (at 44 years old!) on Friday and didnt want any side effects to spoil it.

I am going through the 'god I have this for life' kind of feeling, my hair has been coming out for a year now, I have hair like a well plumped toilet brush so its not that noticeable but it breaks off and is very dry/fluffy.

My fear is losing all my hair and my teeth, started to get cavities at the back next to the salivary gland and had to have a mercury filling due to my poor quality saliva totally dissolving the white filling. So my biggest fear is losing all my teeth and I have always had good teeth, my dentist is seeing me every 3 months now to monitor it and I have the flouride mouth wash and biotene as well.

The pain is awful, I take panadol osteo as I cant take NSAIDs. so anyway - things have caught up with me and I am feeling incredibly lonely with this at the moment, there are no support groups in my area so noone to ask questions and tell me what is and isnt normal.

Then I read your post about feeling better, the improvement in dryness, your hair - and I swear to god I wanted to hug you, it is such a lovely and positive post and has given me the strength to not worry too much about starting my plaquenil next week.

I have decided to tell myself off - because all drugs have side effects whether or not we realise it and I am praying that the benefits will out weigh the side effects with the plaquenil.

Thank you again for such a nice positive post - it has given me a lot of hope and I really hope things continue to get better for you.

xxxxx
Title: Re: Feeling better and better
Post by: smallfry on November 19, 2011, 05:34:47 PM
Hi 4Kids

I am so very happy for you, You don't realise just how sick you are until you start to feel a bit better.I think that we must have started plaquenil around the same time. I am also feeling a bit better with signs of new hair growth.

Good for you.

Cheryl
Title: Re: Feeling better and better
Post by: 4Kids on November 19, 2011, 09:07:38 PM
Thanks everyone. I should have mentioned that I think my iron supplements have gone a long way to helping me out. I didn't take a salagen today, just to test and was a bit dry but nothing terribly. After I had two huge Pepsi with supper the ither nigt, I was a lot dryer. But now that I know, wow, is that good.

I hope your hair does come back Corella! My hair is normally awesome, thick and healthy. I have the hair of an average person now but I can see less and less scalp in a little over a week on iron so am sure it will get back to a normal I can live with :) my gosh, I am sorry for your dental troubles. I hope Plaquenil helps you too.

 
Title: Re: Feeling better and better
Post by: eyeamdry on November 19, 2011, 09:44:30 PM
Corella-what a wonderful accomplishment at 44=college graduation.  I have two friends who both graduated at the same time a few years ago.  (Different colleges) One was 45 and the other 55 and I was so proud of them. Hope you get a break in your health.  Kucy
Title: Re: Feeling better and better
Post by: gold55 on November 20, 2011, 02:17:57 PM
so happy to hear all the positive results with Plaquenil!!!!  Happy for anyone who is feeling better no matter what the remedy is however, I'm thrilled about Plaquenil because I know it's scared a lot of us!!  thanks for sharing and wishing you many more "even better days" ;D
Title: Re: Feeling better and better
Post by: A66eyroad on November 28, 2011, 11:51:20 AM
Corella, I'll be humming Pomp and Circumstance for the rest of the afternoon!

CONGRATULATIONS!
Title: Re: Feeling better and better
Post by: bloodless on November 28, 2011, 11:58:41 AM
That's great news! I'm glad to hear it!

Corella, hang in there. It takes a while for plaquenil to work, but I found it to be great!
Title: Re: Feeling better and better
Post by: engy on November 28, 2011, 01:35:53 PM
Woot, woot! So happy  :) for you!

Any improvement for us is a milestone & should be celebrated.

 I know that the people around me notice the positive change in me but don't really understand how crappy I've felt so they have no clue how great it is to have improvement.

Raising my glass (of G2, lol) to you!  Carie
Title: Re: Feeling better and better
Post by: YYC_ Mommy on November 28, 2011, 06:35:45 PM
Hi 4Kids

I am so very happy for you, You don't realise just how sick you are until you start to feel a bit better.I think that we must have started plaquenil around the same time. I am also feeling a bit better with signs of new hair growth.

Good for you.

Cheryl
That is an excellent way to put it......."you don't realize how sick you are until you start to feel a little bit better"!! Awesome quote!! Glad to hear that Plaquenil is working for you as I know that it has helped me greatly:)
Title: Re: Feeling better and better
Post by: Corella on December 01, 2011, 02:44:20 AM
I had to read this again to calm myself down.  Been on Plaqeunil since Sunday and have read about lots of people losing their hair whilst on it.

The Sjogrens has made my hair so brittle and weak and I have lost lots of it so as you can imagine I am terrified of losing more and if it is a choice of going bald or stopping the Plaquenil, then I will stop the Plaquenil.

It puzzles me as to why some people lose their hair on the drug and some it helps, but I am praying that it helps me.  My hairdresser told me I would never be bald (I have hair like a loo brush, even if the ends are weak) but I dont have her confidence.

Just ordered some AVEDA haircare products which are meant to be excellent for brittle hair, so fingers crossed.

But I have my fingers crossed that after 6 weeks, I get the positive results I am reading in this thread.  It was 31 degrees today and I am holed up in my house, giving 'my eyes a drink' every few seconds.

 8)
Title: Re: Feeling better and better
Post by: 4Kids on December 01, 2011, 08:25:35 AM
Oh hugs. I also take Saw Palmetto to fight some PCOS effects, not sure if that is a problem for you (belly fat?) and that does seem to help as well. Hair loss is so upsetting  :-[. It feels like it is changing who I am, although my hair hasn't gotten worse but it makes me feel so sad.

I had a bad day yesterday (PMS). I have decided to be grateful as that is one bad day, not a month full or at least 10-15. Right.
Title: Re: Feeling better and better
Post by: artsyamerican on December 01, 2011, 07:30:28 PM
I am going to ask my Rheumy abt Plaquenil! I would be soooo happy if I were in your shoes.  My hair is so thin...it's terrible! The dryness is horrible.  The pain is the worst.  I am coming off of steroids and sulfasalazine and by the time I see Rheumy again...I think my body will have recovered enough to try something new. I am SOOOO happy for you and your great days!
Title: Re: Feeling better and better
Post by: smileandbehappy on December 02, 2011, 12:32:42 AM
It's so good to hear great reports about plaquenil.  I have been taking it for three years and I call it my  wonder drug.  I still have this and that wrong with me but when I think back to how I felt before the plaquenil it reminds me of how lucky I am today. 
Title: Re: Feeling better and better
Post by: Corella on December 02, 2011, 01:01:14 AM
I have learned to my cost that Plaquenil and eggs do not mix well with me and only just made the loo in time this morning, which made my husband laugh (he wouldnt have laughed had I not made it!!)

Stomach cramps a bit better today, have just over a week till I increase it.  Does it really matter though what time of day you take it as to avoid gastro problems? I only have my main meal at night and eat lightly in the day so that is when I take it and that is what is on the bottle but I just wondered if you avoid gastro by taking it with less food earlier on?

Looking forward to the benefits though, and thats what gets me through the side effects.
Title: Re: Feeling better and better
Post by: A66eyroad on December 02, 2011, 06:06:38 AM
I always take my Plaquenil with my supper -- and I take it with a bite of food to make sure it gets all the way down because my esophagus is even drier than the pill.   :P
Title: Re: Feeling better and better
Post by: 4Kids on December 02, 2011, 06:57:32 AM
I take it before bed. Both pills. I am also on Metformin so I am not sure my stomach would notice more upset or not. I don't have acid reflux though (luckily) and have no worries about constipation, anyway.