Friday, September 19, 2014

Thursday, June 09, 2011 Kathy D., Community Member, asks

Q: Does anyone else battle full body swelling during a flare?

Whenever I'm in a flare (which I currently am), I swell all over--I have to wear larger shoes, pants, blouses, etc.  I elevate my legs, but the swelling does not completely go down overnight when I awake the next morning.

 

Would this be inflammatory arthritis or rheumatoid arthritis? My rheumy has me listed as a "high risk rheumatoid arthritis patient".  All he can say is I have a lot of inflammation in my body.  The bone scan and x-rays show joint damage but I do not have visible damage.

 

I take Plaquenil (200 mg) 2x day, Prednisolone (4 mg) 2x day, and was on Orencia but it stopped helping.  I started Actemra (4mg) 2 weeks ago--and have been in a flare (and swollen) ever since.  The rheumy says he will increase to 8 mg next infusion. 

 

He doesn't seemed concerned about the swelling and placed the blame on the Prednisolone.  My old rheumy would give me a Medrol dose pack to get the inflammation out of my body and stop the flare. The old rheumy said that was the only way to stop the inflammation cycle I was in.

 

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Answers (2)
V, Health Guide
6/10/11 7:31am

Hi, Kathy,

 

I hate to say this, but I think I would seek a second opinion. It couldn't hurth, right? I am also in a flare at the moment, and 8 mg of prednisone would do nothing for me.  I am taking 15 mg a day along w/Celebrex and my MTX. My ankles swelled up something awful.  Now that I am on the prednisone they have gone down a whole lot.   Evidently, you don't have a firm diagnosis, so I am assuming your blood tests are negative...???  I was just dx with seronegative RA, so I can totally relate to the frustration of just needing a Dx so treatment can be started and you can get on with your life.  It has taken me ten years of seeing two bad rheumys and finally finding a good one to get a Dx.  My current rheumy dx me on the first visit and spent over an hour with me.  You must be miserable with that all over swelling.  Please either talk to your current doc about your concerns, or make an appointment with a new rheumy and see what he/she says.  I'm voting for the new rheumy.  Wink

 

Blessings,

V

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Kathy D., Community Member
6/10/11 9:01am

V,

 

Well, my old rheumy diagnoised me with RA even though I'm seronegative for the Rheumatoid factor but positive on the other markers, he said my bone scan, SED Rate, and CRP all pointed to RA (and my paternal grandmother also had the disease which points to genetics).  The only reason I left my old rheumy was because he started handing me off to his PAs so he could do research.  But he was really good about ordering them to give me a cortisone shot or Medrol dose pack when I was flaring.

 

My PCP suggested I see this new rheumy who basically started all over with testing me for everything--Lupus included, I didn't mind it but now that I'm in a flare (which I told him about at our first meeting) and he's on vacation and won't call me in anything into the pharmacist, I'm beginning to wonder about him.  When I first met him he really knocked my old rhuemy for having me on prednisolone for the past 15 years.  He wants to take me off of it completely, but there is nothing that controls the RA.  I know it's a catch 22 but he shouldn't leave m hanging.

 

At our first meeting, I explained that I had failed several drugs---Celebrex, Humira, Methotrexate, Enbrel, Simponi, Mobic, Avara, and Orencia.  Now he's put me on Orencia which I think made my flare worse!  He says the dosage just needs to be increased, and wait until the next month's infusion, but if I'm swelling like a balloon and miserable for 4 weeks, I think that deserves immediate attention.

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Kathy D., Community Member
6/10/11 9:02am

Btw, the new rheumy admitted that my body has a lot of inflammation.  I think he's just overwhelmed by my case.  He's quite young.

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V, Health Guide
6/10/11 10:36pm

You may be right, Kathy.  He may be overwhelmed.  You certainly have a lot going on and you aren't having a lot of luck with the med regimen he has you on.  Are you going to make an appointment with another rheumatologist.  I know you must be miserable, and you need some help.  Do you need a referral, or can you make an appointment on your own?

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Lene Andersen, Health Guide
6/15/11 2:49pm

To clarify terminology, rheumatoid arthritis is one of the inflammatory types of arthritis. The term inflammatory arthritis is the umbrella term for a number of conditions that are characterized by inflammation and rheumatoid is one of them.

 

It takes a while for medication to kick in and while you wait, your disease will still be in an active flare. One of the things that can to do that flare is a booster pack of prednisone, as you've tried before. I would definitely recommend that you talk to your current rheumatologist about increasing your prednisone to bridge the gap between now and when the Orencia hopefully will kick in. That said, when you're looking at long-term benefits, especially for people who have moderate or severe disease, medications other than prednisone tend to do better.

 

Prednisone does tend to come with some swelling or weight gain and one of the side effects is a characteristic "moon face." Yours does not sound like typical weight gain, but may be more a form of bloating or edema since it subsides somewhat overnight. One of the options is to hang in there for another month or two to give the Orencia a chance to work or you may want to go back to your rheumatologist and have a more in-depth discussion regarding your concerns.

 

Good luck! Please give us posted on what happens?

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Kathy D., Community Member
6/15/11 4:14pm

Lene -

 

My OLD rheumy gave me dose packs of prednisone and/or cortisone shot when I had a severe flare--as I am having now.

 

My NEW rheumy is refusing to give me anything for the flare--especially prednisone.  He does not believe in prednisolone treatments and plans to wean me off of it (I've been on it for 15 years--4 mgs twice a day).  He does not want me on prednisolone at all. **My old rheumy tried to do it and the inflammation skyrocketed--I ended up having to have two cortisone shots and dose pack and one refill to get all the inflammation out of my body.

 

The Orencia was a bust--I only took 7 rounds of it.  The new rheumy put me on Actemra...I was already in a flare, and he knew I was in a flare.  The first dose of Actemra was 4 mg and the new rheumy said that my body just needed to get adjusted to it...the second round should be better.  Wel... my body did not adjust, I took the Actemra on a Friday (May 20th) and by Monday my feet were extremely swollen and have been ever since.  Now, all my joints are painful, swollen, and pain.  I'm losing my range of motion in my shoulders.

 

Basically when I called him and told him about that the flare was getting worse he still wouldn't budge on give me a dose pack.  He said he was out of the country and told me I would have to wait for 3 weeks until his return.

 

I called his office again 1.5 weeks later and his nurse told me to contact my PCP.  The PCP gave me a cortisone shot and Ultram and said that swelling was IN FACT inflammation NOT fluid retention.  The PCP is disappointed with the new rheumy suggested.  I had went up two clothes sizes and up two shoe sizes.

 

I know I'm a new patient, but I've been battling RA for the past 15 years--I know my body and know when I'm going into a flare and I've never come out of a flare without alot of medicinal help.

 

The only reason I left my old rheumy was because I never saw him anymore--he'd passed me on to his PAs so he could do research, but at least he did guide them.

 

Maybe my new rheumy is "green" and will have to learn and maybe I need to be patient, but it is kind of unnverving that he's not listening.  O.k. he doesn't like prednisolone, but give me something in the place of it.  The RA has already been found in my eyes (iritis) back in January when I was on Orencia, Prednisolone, and Plaquenil (and my inflammation was "damped down" somewhat)--the eye specialist says it's not getting better but worse.  My RA is not under control.  His words not mine.

 

The new rheumy is wanting to recreate the wheel--"maybe you don't have RA but inflammatory arthritis".  All the extra tests he ran does not point to anything else.  O.k. whatever, just help me get out of this hole of inflammation.  My health has been deteriorating since I started with him in April.

 

Unfortunately, due to my insurance I can't doctors would a referral--which takes about a month to process.

Reply
Lene Andersen, Health Guide
6/16/11 12:35pm

Rheumatologists vary. Some believe prednisone can be an important part of keeping RA under control, whereas others believe it is a devil drug. Okay, so that's a little extreme, but also sort of accurate. Prednisone doesn't have some nasty side effects, but on the other hand, all drugs have potentially nasty side effects and it's a matter of weighing the costs and benefits. Ideally, you'll find a biologic that takes care of information for you without the prednisone. However, in the meantime you need to control the inflammation and in your situation, I would think that temporary prednisone could be warranted as a way to control inflammation until your biologic kicks in, as waiting can leave you vulnerable to damage. Of course, I'm not a doctor, but it sounds as if your PCP agreed and I'm glad you got some help from them.

 

Finding a rheumatologist who clicks with you in terms of personality and treatment approach can be a bit of a trial and error process. As well, the relationship with your doctor is like any other relationship - it takes a while before you adapt to each other. However, it sounds to me as if you're not comfortable with your new rheumatologist and you have a couple of options. One is to practice self advocacy and have a serious conversation with them regarding your concerns and the issue of prednisone - you obviously seem to believe that the risks of prednisone are outweighed by the risk of active RA and it may be valuable for you to have a discussion with your doctor about that. You have lived with this disease for a long time and know your body and what works. If your new rheumatologist doesn't listen to you, consider talking to your PCP about switching to another doctor, perhaps going back to your previous rheumatologist. It may take a while, but it sounds as if you PCP is tuned into the issue and can help you bridge with the prednisone. Should you decide to go this route, you may want to time the switch to take place after your next Orencia infusion, which hopefully would not leave you without specialist care for too long.

 

Good luck! Please keep us posted on what happens?

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By Kathy D., Community Member— Last Modified: 06/16/11, First Published: 06/09/11