[Nutty]

Hi everyone,

I am going through a bad episode of serasitis right now, especially around my heart. I had been trying to reduce my prednisone and I think this is what has brought it on.

The rheumy is not really sure what to do. I'm now on a higher does of prednisone then I've ever taken and it's not working. The prednisone never worked before, it was only when they put me on methotrexate that the serasitis got under control. Now the metho is not working. I'm taking 25 mg of metho by pills. I'm starting the injection tomorrow. He said he would start me on 20 mg for a couple of weeks and then go up to 25 mg. He is also considering switching me to imuran, but he said it could take a few months before it starts working. I can't take any anti-inflammatories because I am on coumadin as well.

I'm getting a little worried. Today, I'm really having a hard time breathing. I was on 20 mg of predisone and increased it to 40 mg, but it doesn't seem to be working. How long does it usually take to know whether this dose will work or not? He said I may have to go as high as 80 mg. I'm supposed to call on Monday and if I'm not better, I think that's what he will do.

Also, in February I developed diabetes from the prednisone. So, increasing the dose is causing my blood sugar to go wild. It's takes a while to get it under control. I have blurry vision again and all the fun stuff that comes with high sugars.

Sorry, just not having a good day.

Is there anyone else who suffers from serastitis, pericarditis? What are you taking to help it?

Thanks.

Nutty

 

[pennylp]

Hi there,

Iam sorry you are having such a bad...I just wanted to send a big
(((((((((((((((((((hugs)))))))))))))))))))):hug:And let you know I am thinking of you... It was great chatting with you last night...
You take care of yourself and if it gets worse this weekend dont wait till monday go to the ER... And stay out of this heat... Keep cool and rest...

Love Penny

 

[Nutty]

Thanks Penny,

I enjoyed the chat as well. My husband just went out to pick up my meds and told me I wasn't going anywhere this weekend! Humidy is bad.

Thanks again for your support and have a great weekend.

Nutty

 

[Lily]

(((((((((Nutty))))))))))) The only thing that helped me when all else failed was getting huge doses of steroid infusions in hospital for a couple of days. I hope that this settles with the higher oral dose for you, but if you have to don't hesitate trying the IV route, it seemed to work wonders for me. And you don't want to suffer like this for too much longer, it's so painful :hugbetter:

love
Lily

 

[Nutty]

Funny you should mention that. I've never had it before but I read about Prednisone IV working well, but I was thinking about it tonight. If the metho injections don't help then I will definitely has him about it. I have a feeling that increase the prednisone is not working well or fast enough. I was on 8 mg when I got sick. Went up to 20 mg and now 40 mg and I'm worse again today.

Thanks for the tip Lily. This time I won't be afraid to ask. Do you go back to a low(er) dose of prednisone after the IV treatment?

It does hurt. I went to sleep half-crying tonight cause I thought I was dying from the pain. I'm up now of course with the insomnia. He has me taking some of the prednisone at supper, so I'm lucky to get a couple hours of sleep.

Nutty

 

[Lily]

Hi Nutty,

How are you feeling today, any better?

I can't take oral steroids these days, I get psychosis and after two weeks start having diabetes symptoms with as little as 5mg. Thank goodness my current meds are controlling the serositis in the main part.

I have taken them in short bursts (even that is not a nice situation) but I would imagine that if you are only on that higher dose for a very short period then it shouldn't matter going back down to your maintainance dose. However it's best to ask your doc he will take your personal circumstances into consideration, especially if your Lupus is unstable as it does sound like it is right now.

I hope you are a little better today, it's no fun putting up with those sorts of symptoms

love
Lily

 

[LBH]

I was thing the same thing

I was thinking the same thing about IV Steriods. I just want to send warm hugs your way and hope you get better soon. Sorry to hear of you being so sick. This lupus mess is no fun picnic.

 

[ColleenT]

Hi Nutty,

How are you doing? You were going through some pretty rough times in your last posting! Hope you're starting to feel a bit better and that you've found the right meds for comfort. Please do let us know how you're doing!!

All my best wishes
Colleen

 

[lin]

just sending you a ((((((((((((((hug)))))))))))))))

Lin xxxxxxxxxxxx

 

[Nutty]

Thanks everyone for checking in.

I'm still not doing so well. They've increased my prednisone again to 40mg and started the methotrexate by injection. It hasn't helped at all. I went to my GP yesterday and he put me back on the Fentanyl patch (100mg) and it's barely touching the pain.

I put a call into my rheumy yesterday, but he did not call back. I suspect he will just increase the prednisone again, but I want to ask him about the IV prednisone. Has anyone had that done? How long is it for? Do you have to stay in the hospital? I think I need drastic measures taken. Life my GP said yesterday, nobody should feel their heart moving! He couldn't imagine the inflammation being that bad. I can't do anything with my arms anymore.

He also said that he would most likely switch me to imuran, but he would have to keep the metho going too as it will take a few months for the imuran to kick in. Does anyone have an experience with this?

Thanks again for checking in. I can't express enough how much that means to me.

Nutty

 

[Lily]

Oh geesh I am hoping it's the receptionist at fault being the reason your Rheumy didn't ring you back. I would ring again today and yet again later on in the day.

I stayed in hospital for my IV Pred for 2-3 days, that worked for me.

I can't help with the Metho/Imuran thing, I've had no experience with Metho. Imuran has been a great drug for me though and is good for organ involvement whereas Metho has much more of a reputation for helping joint problems (although there are exceptions to that I am sure).

I hope you get a call back today, this is beyond ridiculous (((((((((Nutty)))))))))

What would happen if you just fronted up at ER? Maybe they would call your Rheumy anyway? That's one way to get through to him

love
Lily

 

[Nutty]

Thanks Lily,

He did call back after I called the Rheumy on call...turns out it was him.

He put me on 70 mg of prednisone yesterday, then go to 60 today. Well 60 didn't work, so I took an extra 10 tonight (so can't sleep agai). The 70 mg isn't making me better, but it's the first day I'm not getting worse. So, I may have to go to 80 mg.

Does anyone know how long you generally have to feel better on the high dose before they start cutting it back?

Thanks everyone. I have more questions, but this is all I can type for now. As they say "I'll be back"

Thanks.

Nutty

 

[Nutty]

Update

Well, I ended up on 80 mg prednisone and did not got better. My Rheumy called me at home on Saturday (w0w what a Doc!) and suggested that I go to the hospital (couldn't tell me staight out to go). So I did have pericarditis. The gave me indomethicien in addition to the high Pred. It took a good 2 days to get any relief. I don't normally take inflammatories because of coumadin, but the had to stop the inflammation. Just got home today. I still have a bit of recovery ahead of me, but I feel 200% better. I could brush ,my teeth, move my arms or simply move for the pain and inflammation. I will be on the same high dose of meds and pain killers for the next couple of weeks, then we'll have to decide whart to do next.

This is my first time on this much prednisine. How does it work from here (e.g. how quickly can you reduce it? I went from 8 mg to 80 mg! Now my INR and diabetes are way out of whack, so I have to get on those doctors tomorrows.

Nutty

 

[ColleenT]

Hi Nutty,

So glad to hear you're feeling a little better. You sure have been through a lot! I do hope you continue to improve!!

How would you describe the feeling you get with pericarditis? I've been having some chest pains and am so afraid to make a fuss that I have not told a soul! I get palpitations every now and again too! I'm so afraid that this whole thing has become a bit psychosomatic! Could I possibly be bringing it on myself? They're definately there but while its not unbearable it sure is uncomfortable and worrying!

Any advice?

Take good care
ColleenT

 

[Nutty]

Hi ColleenT,

I completely understand why you are afraid to mention your pain. That's why I suffered for two weeks before getting the care I needed. My husband and I battle about it all the time. He wants me to go to the hospital ans I always refuse because I say they either won't believe me or they won't do anything for me. Even this time one doctor suggested that maybe I pulled a muscle (grrr).

I call the pain an extremely raw pain, like someone is rubbing an open wound. It was so inflammed I could feel my heart rubbing against the lining. Any kind of movement makes it worse. Shortness of breathe occurs as well. I didn't have any heart palpitations but they asked me that question many times. I think it is safe to say that you shouldn't ignore chest pain. I would definitely ask your doctor about it.

Good Luck.

Nutty