What to expect?
Posted 08 September 2008 - 08:22 AM
My name is Laura. I have many many questions. My doctor has spoken with my new rheumatologist (which I haven't seen yet) and told her what my bloodwork said...
LATEST BLOODWORK - Showing Scleroderma
SCL-70 AB positive (Cascade interspretive comment: SCL-70 antibody is strongly associated with scleroderma.)
Rheumatoid factor 20 H
ESR 32 H
My sed rate and RF have been continually high for months now. I have been on Celebrex 2x's a day 3/28/2008 to 7/18/2008 then I stopped it because my first rheumatologist said that this was just a virus. Well after so many months on it I didn't feel like this was a virus and decided if it was that I could stop the celebrex and be ok. Well after a few days of being off the celebrex I was dying. So much pain so I started taking it again but made an appointment with my doctor who decided to put me back on prednisone to try and get this under control and he decided since I had had a positive ANA in the past to look at that closer and see what is going on since my first Rheumatologist seemed to dismiss me. So that is when this bloodwork came back and I found another rheumatologist to go to and my doctor talked to her and she said not to put me on a high dose of pred because with sclero patient you have to be concerned with the kidneys. Well after being on pred for like six weeks now I am in a lot of pain still and still waiting to get into the rheumatologist who is trying to get me in sooner than the November 25th date I am scheduled for but is taking forever. So I went back to my family doctor today and he is going to get me off the pred and put me back on the celebrex 2x's a day in hopes of reliving some of this. The only thing that seems to take away my pain is if I take flexeril and a heavier drug together then it makes me tired enough to sleep. My doctor is worried about me being on the heavier drug though.
7/28/2008 - I started having a hard time breathing when I went to bed, I have to be boosted up with pillows. The last couple of weeks it feels like no matter what I am doing it is difficult to breath. I can't walk from my car to the store without feeling winded.
I also started with acid reflux that I have never had before other then when pregnant. That is very uncomfortable.
So as I wait to get into this rheumatologist, any suggestions? Any tests I should be having done before seeing the rheumatologist? Any advise?
Posted 08 September 2008 - 09:11 AM
Sounds like you've got a lot going on. I'm so sorry to read about the pain you are in and the problems with dealing with it. I hope the Celebrex works for you. It does sound like your primary care physician and the new rheumatologist are really on top of things and working in your behalf. Finding a rheumatologist that knows about prednisone and the possibility of it causing kidney problems with scleroderma patients is a good thing. Not all rheumatologist know this. I hope you can get in sooner than November. Just keep trying. I would call every week to check for cancellations. Will they let you do that?
With all of the breathing problems you are having you might ask your primary care physician about a pulmonary function test. This would be a good test to have prior to seeing the rheumatologist. It's very non-invasive, but provides quite a bit of information.
Here is a link to our reflux page. Along with general information, there is a page on reflux and diet and reflux prevention. Many of us take a proton pump inhibitor like prilosec or stronger. Ask your doctor about it. Also, lifestyle changes and diet changes help a lot. You'll find several ideas in the link.
We have had a couple of threads about reflux prevention. I'll see if I can find them then post the link.
Hang in there Darlin'. You've come to a good place. We're here to support you and help in any way we can.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 08 September 2008 - 09:43 AM
I have positive ANA too. At first my doctors thought mine was a virus too.
Janie's advice about the proton pump inhibitor is very good advice. I take Nexium twice a day. I sleep on a large wedge pillow to keep the reflux from being aspirated into my lungs at night. My lungs are already bad and I certainly don't want them to get worse.
Do you have problems swallowing?
Your breathing pattern sounds so much like mine when it started. I would encourage you to go to a Pulmonologist, for that PFT and most likely a cat scan. Most general doctors order an Xray, and don't order a high resolution cat scan, CT , which can show pulmonary fibrosis and another symptom called 'ground glass" that a X ray cannot show as clearly.
How much Prednisone were you taking? Does the Celebrex help as well. I have to take the Prednisone for the inflammation in my lungs. I was down to 9mg... and now I am at 20mg. The max I took when I first became ill was 40mg.
I hope the Rheumatologist can squeeze you in a bit sooner. But if I were you I would try to get in to see a Pulmonologist ASAP. If I hadn't, I'd most likely be on Oxygen 24 /7 by now. With medication some of my lung capacity came back.
Laura , you do have a lotofkids!! They have such beautiful names.
Posted 08 September 2008 - 10:02 AM
I am sorry for all of the trouble you are having - you came to the right place for support tho! The people on this board are incredible.
I agree that getting in for pulmonary tests ASAP would be a good thing. I think the more you can get done between now and your rheumatologist appt might be to your advantage. The rheumatologist is probably going to have you do it anyway so why not get a jump on it. The pulmo tests are easy and will tell them a lot about the current condition of your lung capacity. Even if there isn't anything going on right now it is wise to have a baseline.
There are many meds out there for the reflux and if it were me I'd start on one now - you can aspirate and cause even more severe lung problems. The only thing is that I found that several of them interferred with other things I was taking (Prilosec interferes with Methotrexate, most of the others with Iron that I take for Restless Legs, etc.) I ended up with Zantac 150's BUT only my pharmacist knew this information! The rheumatologist, the GI and my primary care physician all recommended Prilosec without even checking - when I told each of them they looked it up and agreed but were quite surprised I was right. So anyway - check in with the pharmacist before you walk out the door with an over-the-counter - please!
"no longer expecting my doctor to be a chemist"
Posted 08 September 2008 - 01:17 PM
Posted 08 September 2008 - 01:18 PM
Posted 08 September 2008 - 01:28 PM
I'm sorry to hear you are having such a difficult time. Maybe you can find another Rhuemo that see you sooner? If so, I would keep your other appointment for 11/25 in the event you don't like the one you see or you want a second opinion. Maybe your primary can reach out to the rheumatologist to discuss your need to get in sooner? Just a thought.
Posted 08 September 2008 - 01:33 PM
Posted 08 September 2008 - 02:48 PM
You've come to the right place for help. Everyone here is so very supportive of each other. I hope the medication you are taking starts working soon to give you relief from your pain. I also was in a lot of pain and felt so extremely tired. The rheumatologist I went to prescribed pain medication and it was such a relief to finally not feel any more pain.
Everyone has given you fantastic advice and I wanted to say welcome. There are many new findings posted here and numerous links to medical research and information. I hope you are able to get in to see your rheumatologist real soon.
I also love the names of your children!
Posted 08 September 2008 - 05:36 PM
Welcome to you and lotofkids.
Sorry to hear you are going through so much. Rheumatologists are so hard to see at first. It does take a long time to get in. Hopefully your Doctor can pull some strings.
Your primary doctor should be able to give or recommend something for reflux. Prednisone can be tough on the esophagus and stomach.
Putting the head of my bed on blocks is the only recommendation my gi doctor gave me. He says wedges and pillows are not effective because you slip down with the wedge and are laying too flat and pillows bend your stomach causing more pressure and actually causing more reflux. Refux can cause alot of breathing problems too. Don't eat or drink at least a couple of hours before you go to bed. Sometimes a doctor can give you a script for pulmonary function tests and some hospitals will do them as outpatient procedures if a pulmonologist isn't available. It sounds like you need some attention as soon as possible if not sooner.
Keep us posted and wishing you speedy relief.
Posted 09 September 2008 - 07:36 AM
Posted 09 September 2008 - 10:56 AM
Posted 09 September 2008 - 12:00 PM
Wow 9 kids, I have a blended family of 8 - when my husband and I got together the youngest was 3 the oldest was 12, it was a ton of work but worth all the effort.
My family physician referred me to an internal medicine doctor first. The internal medicine doctor knew personally the rheumatologist she was going to refer me to for Scleroderma (soon as she saw me she new I had SD) so she called and asked what tests she would like done while I waited for the appointment, the first available appointment was in 3 months, here is what the rheumatologist who is an SD expert said she would like ordered and to bring the results/reports with me to my appointment which I did and worked very well.
Blood Work which included CBC (standard functions) and Immunology series which sounds like you already had.
Hope this helps you
First Sympton Nov/05
Posted 09 September 2008 - 02:11 PM
I pm'd you with my rheumatologist and pulmonary doctors names and phone numbers.
Posted 09 September 2008 - 02:47 PM
I am going to call the rheumatologist office tomorrow and tell them I want to be prepared, these are the symptoms I am having what test can I have my primary order so I am not just sitting around waiting.
We had our first 5 in 5 years, actually having 7 pregnancies in 5 years ON birthcontrol. I go into labor at 24 weeks, we had 2 preemies and a failure to thrive so after that we decided to call it quits on our own and did foster care for about 4 years before adopting a sibling group. We got our girls when they were 2, 1 and 6 months and our son was born during the process.
Posted 10 September 2008 - 06:02 AM
I'm sorry I'm so late in welcoming you, but I'm so glad you are here! Sounds like you have a lot going on and you've received some great advice. So I will just give you a bug ole hug! Can't wait to find out how your appointment goes.