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misskay
09-08-2010, 12:36 AM
I've been on high dose Pred since April. Started at 80mg daily, then in June we backed it down to 60 mg. 4 weeks ago we dropped to 40mg, then 2 weeks ago to 30mg. Talked to the doc today and he wants me to drop it starting tomorrow to 25mg, then in 2 weeks drop it to 20mg.

With the last drop (to 30mg) I noticed the joint pain returning, but slight. The vasc in my fingers improved though so to me it was worth the trade-off. Now I'm worried that the next drop in dose is going to make the joints flare up badly again...

So my question to you experienced WG, is it normal to drop the Pred this fast? How fast did your dosages drop, and how did you do? Pretty nervous...

btw- he also said that the loss of taste (unless it's really sweet or really salty everything tastes like sawdust) is most likely from the Pred, and dropping the dosage may help that also... thoughts?

jola57
09-08-2010, 12:47 AM
We are all individual in how we drop pred. the rule is tho to go faster at higher doses and then from 15 on go very very slow.I came down from 60 to 30 in 10mg per month, then 5 per month to 15 then by 2 to 10, from 10 I have been doing 1mg per 1 1/2 to 2 months. I am down to 4mg but presently upped to 5 for a couple of days. The reason I am going so slow is because last year I tried going down as my doc suggested, fast, by dropping like you and then 2 mg every 2 weeks, and as soon as I got to 5 1/2mg I flared badly and was put on cyclo for a year. good luck, my suggestion would be to go very slow. Talk it over with your doc.

Jack
09-08-2010, 01:31 AM
There are two dangers in reducing Pred.

The first is Pred withdrawal caused by your own adrenal glands failing to restart. This problem usually occurs when the dose gets below 10 mg and more usually 5 mg.

The other problem is waking up the Wegener's dog. This can occur at any time and is usually signalled by signs of returning symptoms. If this happens, you should consult with your doctor. He may well advise increasing the dose a little and then trying to reduce again a little later.

Reducing in quite big steps when on high dose is fairly regular, but as said, everyone is different and the whole process needs careful monitoring.

JanW
09-08-2010, 01:47 AM
Maybe Sangye and Jack can explain this to me because I don't get it.

I always thought that pred was to get the inflammation down quickly, and once the main engine (immunosuppressant) gets the disease under control, you could drop the pred and the disease would by default, remain in control, because you had good immunosuppressant coverage by then (assuming let's say a month for the drug, or an increase in the dose of the drug). I say, by default, because of course you could always just flare, too, for reasons not completely understood.

I guess I don't understand why, if the immunosuppressant is as effective as you need it to be and fully suppressing your immune system, things start to get out of control again just by lowering pred. Wouldn't this indicate that your immuno isn't at the full treatment dose. I'm not talking about people here who have to remain on token amounts for general wellbeing...but I see a lot of people seemingly getting symptoms in the 20-30 mg range.

Jack
09-08-2010, 02:03 AM
It is not fully understood why the combination of steroids and immuno-suppressants keeps Wegener's under control, but it took many years to discover this (disease first discovered in the 30s but not successfully treated until the 70s). Early treatment used immuno-suppressant only and some tests were also made using only steroids, but both were ultimately unsuccessful even if they managed to slow the progress. Today's treatment uses the combination of the two to get the disease into remission (with any luck!) and then attempts are made to reduce the potency of the drugs used and finally withdraw them if possible. I'm not sure whether many people stay in remission by taking only one of the components on a long term basis, I think this is only a transitional phase.

Sangye
09-08-2010, 02:05 AM
Misskay, I'm just shocked that they kept you on such high doses for that long.... They usually only put someone on 80mg for a few days, maybe a week before dropping to 60mg. And they don't keep you at 60 for long, either. Those doses are very damaging. It looks like they were using pred as the main way to control your Wegs-- typical mistake. You can't redo the past, but please make sure a Wegs specialist okays such a thing if you ever face those high doses again.

Having been at such high doses for so long, you will inevitably have a more difficult time tapering the pred. Your body has become used to having all its ordinary inflammation completely masked, so you're likely to feel more pain as that is withdrawn.

On top of that, most people get joint pain when tapering pred. The trick is to be able to tell if it's "pred-tapering" pain or Wegs pain. For me, they feel totally different, no way to confuse them. But I was surprised at how painful the pred pain could be! A clue that it's pred pain is that it goes away after a few days of the new dose. If you are sure it's Wegs pain, don't let your doc tell you it's pred pain. That happened to me when I was first tapering off pred and the Wegs was never under control for the next 3.5 yrs.

If your vasculitis improved but you got joint pain, it's likely that the joint pain was pred pain and not Wegs. It doesn't necessarily happen every time you drop the dosage, and it isn't necessarily as bad each time. It seems random.

I suggest you keep a daily symptom journal with AM/PM notes. Include the pred dosage and any other drug changes. I find this the most useful tool in helping me figure out what's going on.

JanW
09-08-2010, 07:16 AM
OK, I think that Sangye's explanation makes sense to me, that some of the joint pain is actually pred tapering pain.

I was just wondering how the gold standard was going to be only six months with any pred whatsoever for a WG patient at remission induction (as was remarked upon repeatedly at the conference) if people started experiencing symptoms again lowering past 20 mg. However, it's you're talking about the body becoming much more responsive to ordinary inflammation that makes perfect sense. It's not that the pain is caused by the WG coming back.

Sangye
09-08-2010, 07:25 AM
I agree that we see a lot of people having trouble once they drop to about 20 mg pred. Sometimes I think the main immunosuppressant might not be working optimally, and that 20+ mg pred was helping keep the Wegs controlled. That was the case for me when undergoing initial ctx treatment. The ctx wasn't working, but the pred masked that a bit. Once I got below 20 mg, it revealed how poorly the ctx was working. (Too bad the doc didn't care!)

JanW
09-08-2010, 07:29 AM
So exactly back to what I had said upthread. My rheumy said to me, based on what he thought was the 'tempo' of my disease (many years of stenosis, no other symptoms/damage) that the progression was slow enough that pred never had to be used at all. We can only assume that the mtx worked (and who knows what will happen if I try to wean) because I have no symptoms and bloods have returned to normal levels.

I was thinking that people's symptoms are returning because their immuno levels are too low, and that they are likely too low because they are seeing people who aren't treating aggressively because they really aren't familiar with this disease.

misskay
09-08-2010, 10:37 AM
Thanks everyone for the input... I guess I won't worry too much about the returning joint pain unless it lasts a while. Other stuff sinus issues, vasc in fingertips, etc are getting better, so he's also changed my Bactrim dosage to every Mon Wed and Fri instead of everyday.

I am a little concerned though because I'm feeling more fatigued than I have been (poss the lower Pred dose not keeping me hyped up?), with a constant nagging headache (not horrible, just enough to bug the crap out of me) and some eye pressure/pain. Eyes feel dry and gritty, but water constantly, especially the right one. No vision changes though... guess I'll talk to him about that on Oct 5 when I see him again unless it gets worse.

pberggren1
09-08-2010, 11:29 AM
Thanks everyone for the input... I guess I won't worry too much about the returning joint pain unless it lasts a while. Other stuff sinus issues, vasc in fingertips, etc are getting better, so he's also changed my Bactrim dosage to every Mon Wed and Fri instead of everyday.

I am a little concerned though because I'm feeling more fatigued than I have been (poss the lower Pred dose not keeping me hyped up?), with a constant nagging headache (not horrible, just enough to bug the crap out of me) and some eye pressure/pain. Eyes feel dry and gritty, but water constantly, especially the right one. No vision changes though... guess I'll talk to him about that on Oct 5 when I see him again unless it gets worse.

Did you just start to get this headache when you lowered your Bactrim dose? Does it seem like a sinus headache? Like in the sinus cavities around the eyes and nose? Don't take Ibuprofen for the pain all the time because it can damage the kidneys. I take Tylenol or Tylenol 1s for the pain when I have to.

Sangye
09-08-2010, 12:47 PM
Misskay, keep an eye on that headache and let your doc know if it doesn't clear up. Tapering pred can cause elevated intracranial pressure and those can be the symptoms-- headache, eye pain/pressure. If your vision changes, see an opthalmologist asap.

marta
09-08-2010, 02:23 PM
Hi Misskay,

Whoa, you're in an almost identical place as me. I have been feeling joint pain, a return of some of my old symptoms, including a nagging headache (again, like you, not terrible but very irritatitng), tired, sinus pressure, ear pain, some chest pain. I am on 20mg Pred as of August 22, and started at 60mg in May. Tapered 5mg every week starting mid June. Just went to my GP today and sent of a fax to my rheumy two days ago to see what I should do regarding all these symptoms. My GP told me that I could up the pred to 35mg for three days and then go back down to 20mg and see what happens, but she also said I could wait and see if my rheumy gets back to me with different advice. I will do that as I'm feeling better today than I did a few days ago.:unsure:

I keep reading the advice to get a Weg Specialist on your case, and although I would love to and have made numerous attempts including getting a hold of the Vasculitis group to get their list of specialists, I am unable to. The closest I can find is Phil's doctor, and the Vasculitis people sent me a list of doctors (various specialties) in Western Canada who 'have Weg patients' but no 'Weg Specialists'. I read the other day in a thread advice to get a specialist who sees several Weggies a day. That makes sense in an area with a large population base, but where we live it is not the case. My GP is an hour away, my rheumy is 4 hours away. Phil's Dr. is a 4 hour drive plus a couple hour flight, the Weg Specialists in Toronto are a four hour drive plus a four hour flight and more than $800 (on a good deal) for the return flight.

I really like my doctor. She's a very smart, lady who has saved my life once before - during childbirth, so I trust her with my life, but I am her ONLY Weg patient, and she is a human being who has a life and I am only part of her work life (amongst hundreds of other patients.) This is why this group has been so good for me to learn from people who are living this thing, and have done more research on it than either of my docs. I totally appreciate the wonderful advice and wisdome from the members on this site. I also understand the push to get a Weg specialist, but sometimes it makes me feel like I'm dropping the ball on my own well being not being able to. It reminds me a little of the feeling I had when I couldn't breast feed my daughter when she was born, and trying everything under the sun to make it work - you wouldn't believe the stuff I tried - and then being told that "if it doesn't work, you're not doing it right" and "how terrible it is for your child not to be breastfed". It's not a good feeling when you're doing everything in your power to do the 'right thing' and not quite getting it through no fault of your own. So I will continue to do the best I can, follow my gut, listen to your experiences (this is why we need to put that book together, this group is a treasure trove of WG information) and stick with what I have, unless A) something better comes along, or B) I'm forced to move to a different place because these guys almost kill me. I hope I don't go there though.

I think I might be having a pred moment. I'm sorry if it's coming across the wrong way.:blushing:

pberggren1
09-08-2010, 02:57 PM
Hi Misskay,

Whoa, you're in an almost identical place as me. I have been feeling joint pain, a return of some of my old symptoms, including a nagging headache (again, like you, not terrible but very irritatitng), tired, sinus pressure, ear pain, some chest pain. I am on 20mg Pred as of August 22, and started at 60mg in May. Tapered 5mg every week starting mid June. Just went to my GP today and sent of a fax to my rheumy two days ago to see what I should do regarding all these symptoms. My GP told me that I could up the pred to 35mg for three days and then go back down to 20mg and see what happens, but she also said I could wait and see if my rheumy gets back to me with different advice. I will do that as I'm feeling better today than I did a few days ago.:unsure:

I keep reading the advice to get a Weg Specialist on your case, and although I would love to and have made numerous attempts including getting a hold of the Vasculitis group to get their list of specialists, I am unable to. The closest I can find is Phil's doctor, and the Vasculitis people sent me a list of doctors (various specialties) in Western Canada who 'have Weg patients' but no 'Weg Specialists'. I read the other day in a thread advice to get a specialist who sees several Weggies a day. That makes sense in an area with a large population base, but where we live it is not the case. My GP is an hour away, my rheumy is 4 hours away. Phil's Dr. is a 4 hour drive plus a couple hour flight, the Weg Specialists in Toronto are a four hour drive plus a four hour flight and more than $800 (on a good deal) for the return flight.

I really like my doctor. She's a very smart, lady who has saved my life once before - during childbirth, so I trust her with my life, but I am her ONLY Weg patient, and she is a human being who has a life and I am only part of her work life (amongst hundreds of other patients.) This is why this group has been so good for me to learn from people who are living this thing, and have done more research on it than either of my docs. I totally appreciate the wonderful advice and wisdome from the members on this site. I also understand the push to get a Weg specialist, but sometimes it makes me feel like I'm dropping the ball on my own well being not being able to. It reminds me a little of the feeling I had when I couldn't breast feed my daughter when she was born, and trying everything under the sun to make it work - you wouldn't believe the stuff I tried - and then being told that "if it doesn't work, you're not doing it right" and "how terrible it is for your child not to be breastfed". It's not a good feeling when you're doing everything in your power to do the 'right thing' and not quite getting it through no fault of your own. So I will continue to do the best I can, follow my gut, listen to your experiences (this is why we need to put that book together, this group is a treasure trove of WG information) and stick with what I have, unless A) something better comes along, or B) I'm forced to move to a different place because these guys almost kill me. I hope I don't go there though.

I think I might be having a pred moment. I'm sorry if it's coming across the wrong way.:blushing:

That came across beautifully.

I hope that a Wegs specialist lands in Jasper.

It is very hard for us Weggies to find a Wegs specialist and then travel to them. I found it hard to travel 3 hours each way just to see my Rheumy who treats about 12 Weggies. Fortunately I do not have to do that any more. That is definitely Divine Providence.

Just keep us in touch with what is going on and don't be afraid to be forcefull with us. We are all here to help one another. Just give us detailed info so that we can give you the best advice possible.

I wish my doc and I could relocate to Jasper.

jola57
09-08-2010, 03:23 PM
I hear you and feel your pain Marta. One would think that in this beautiful city of Vancouver, I could find a Wegs specialist. Nope, nada, nie, zilch, zero.... I think its great to have the book. There will be many more wegies in the future and I would hope that all rheumys would have this at their fingertips to give to their patients. Imagine how wonderful it would have felt to know that all these symptoms that we have are normal and others have them too. No doc could ever be expected to know or explain or warn us about these symptoms. there is just too many.

marta
09-08-2010, 03:55 PM
Thanks Phil, I was hoping after I posted that I'm not sounding like pred-rager. I would love for you and your doc to move to Jasper. That would totally rock! Jolanta, I saw that in my list of docs that the Vasculitis people sent me, no Weg specialist in any of the big cities in the west. I was shocked. My rheumy sees 14 WG patients - that does not a Weg Specialist make... I think.

Book book ( I sound like a chicken) This is one thing I will make happen. I promisse. There, I said it.

jola57
09-08-2010, 03:59 PM
well I think mine sees only me :unsure:

pberggren1
09-08-2010, 04:44 PM
Thanks Phil, I was hoping after I posted that I'm not sounding like pred-rager. I would love for you and your doc to move to Jasper. That would totally rock! Jolanta, I saw that in my list of docs that the Vasculitis people sent me, no Weg specialist in any of the big cities in the west. I was shocked. My rheumy sees 14 WG patients - that does not a Weg Specialist make... I think.

Book book ( I sound like a chicken) This is one thing I will make happen. I promisse. There, I said it.

But who cares if you sounded like a pred-rager or what you sounded like. Because on this Forum we are here to listen and care for one another. I can't begin to describe the support I get from all of you on here.

Marta, never feel like you will be judged on here for the way you might think you come across. We are all grown up and want to help one another. I hope you are on this Forum for many decades to come.

pberggren1
09-08-2010, 04:46 PM
well I think mine sees only me :unsure:

Mine sees only me as well but did run a large Vasculitis Clinic back in Europe.

marta
09-08-2010, 04:54 PM
:back on topic:

I'm chastising myself now. I think I might have steered the thread so I'm bringing it back. Thanks for all your wisdom to Misskay because it helped me off the proverbial ledge. And Misskay, I'm totally with ya, because I'm sure that you and I are thinking the same thoughts right now as we lay in bed and feel all the weirdness inside our boddies.

Thanks to you ALL for all your help and support.

Love ya guys. :love:
I've gone from pred freak-out, to pred love.

misskay
09-08-2010, 10:10 PM
Phil, I start lowering the Bactrim starting today, the headach started about the time we lowered the Pred to 30 (2 weeks ago). I keep hearing that we can have adrenal problems when lowering it... how does a person know if that happens? Are there specific signs or symptoms, or is it like everything else Wg related... and we all react differently. Sangye, if it keeps up or gets any worse I will see a doc asap for the eyes...

Marta... hugs to you girl. Sounds like we are in almost exactly the same boat as far as a WG specialist... not possible for me either. My Rhumy sees 5 WG patients... and so far he, my Pulmy and ENT have kept me alive and starting to feel better than I did months ago. I will trust them until they give me a reason not to trust them... Pred-Love right back atcha :)

elephant
09-08-2010, 10:11 PM
Misskay, I was going through this in May, June and July 2010. Since I doubled the Bactrim every other day...my symptoms of eye, ear and facial pain has improved! My sinuses have improved too. I am so glad that I pushed to increase my dosage of Bactrim because I was not interested in increasing my prednisone or cellcept. It has been four weeks since I increased the bactrim DS. I am hoping this continues!

elephant
09-08-2010, 10:17 PM
Marta, I second what Phil said regarding the Wegs specialist. No judgement here, just glad we have each other. The good thing Marta is that you are being educated about this disease being on this forum and can communicate with your Rhuemy regarding all the info you receive.
I know my local Rhuemy even does more research because I am always questioning....she "my rheumy" is doing quite good. She is more willing to call my WG specialist too. :biggrin1:

Sean48
09-09-2010, 12:31 AM
Hi

I started with 3 treatments of IV 1000 mg of pred then started on 60 on July 20 until Aug 7, then down to 40. I stayed on 40 until 8/31. Now I am on 30 at least until I see my Rhuemy the middle of October. Prior to being diagnosed I was on 2 mg of pred for my RA plus enbrel once a week so I sometimes wonder if I am more tolerant to the pred and cytoxin as I have had no side affects to complain about. I guess it depends on our doctor how we decrease. Interesting isn't it.....
Anyway I am wondering for those who are not near a specialist if your doctor/Rhuemy can contact these WG specialists or vasculitis specialists to consult with them?

Sangye
09-09-2010, 12:33 AM
Marta, I replied to the thread about how many see a Wegs specialist before I read this thread today. I hope you don't think I was referring to you in particular. I saw the breastfeeding thing on a regular basis in my chiropractic practice--sometimes it just doesn't work and the moms had terrible guilt. I guess I'm dense but I don't understand why you can't get to Phil's doc. Yes, it's a long way to go. In Arizona I had to be driven 3 hrs one way to Mayo Clinic. I was on oxygen and it meant loading up the car with several oxygen tanks and then carrying them around all day so they wouldn't explode in the heat of the car. I had friends who would drive 1 hour to get me in Flagstaff, then 3 hrs to Scottsdale, push me and my oxygen tanks around in a wheelchair all day, drive me home 3 hrs and then drive 1 hour home. I moved cross-country to Maryland in 2008. I loved Flagstaff more than any place on earth but JHU is here, and that means life is here. I have no plans to return. I can't stand Maryland (big understatement), but at least I'm alive to say it. There are philanthropic medical transport orgs that will fly you for free if money is an issue.

Misskay, even if you can't travel to a vasculitis center, there's no reason why you can't get a VF consultant on your case. It's free. I also think they're available to people outside the US, but to my knowledge no one in this group has checked on that.

I don't judge you for not getting a Wegs doc, I just think you might not be exploring every option. It might mean having to ask for help in ways that are uncomfortable to you. I think the only people who are truly stuck are the kids with Wegs, since there are no pediatric Wegs docs.

Back on topic... Marta your pain and other symptoms are not likely to be from adrenals while you're still on such high doses of pred. It sounds more like the immunosuppressant might not be working well enough to control the Wegs.

pberggren1
09-09-2010, 05:14 AM
Sangye is right Marta about the Medical Air Transport. Most of the guys in Alberta just have single engine aircraft like Cesnas so are only able to fly about 300 to 400 miles or so. But if you could make it to Medicine Hat and I was off the IV meds and felt better I would drive there to pick you guys up.

marta
09-09-2010, 05:33 AM
Hey Sangye,

I'm not worried about my feelings, I just hope I didn't step on anyone else's. I hate that.

As far as seeing Phil's doctor, he told me that his doc likes to see his patients quite regularly. I can't do that. With a toddler in the house and my husband working full time, the four hours drive to Edmonton, then waiting at the airport, then flying, then driving to Swift Current from the airport in Saskatchewan, and of course having to stay overnight and do the same on the way home, and on top of that the cost is not feasible for someone who isn't working right now and having to pay a ridiculous mortgage - especially if the doc wants to see the patient regularly.

I was thinking yesterday morning about contacting his doc and seeing if he would be into doing something totally out of the box. Phil gave me his contact info, and I was thinking that when I see my doctors, there is nothing in our visits that actually requires me to be there physically, so I was thinking of contacting Phil's doc and proposing that maybe I could be his first on-line patient. We could have visits using Skype, and then I could actually have a Weg Specialist watching over me. I could still see my doc if I actually have something that needs to be looked at in person, but for the main stuff, he could be my man - if he's into it of course.

As far as my symptoms are concerned, I seem to be doing a lot better than a few days ago. So I think I'm going to hold off and see what happens in the next few.

Thanks again, and keep it coming. Never stop.

pberggren1
09-09-2010, 08:05 AM
Hey Sangye,

I'm not worried about my feelings, I just hope I didn't step on anyone else's. I hate that.

As far as seeing Phil's doctor, he told me that his doc likes to see his patients quite regularly. I can't do that. With a toddler in the house and my husband working full time, the four hours drive to Edmonton, then waiting at the airport, then flying, then driving to Swift Current from the airport in Saskatchewan, and of course having to stay overnight and do the same on the way home, and on top of that the cost is not feasible for someone who isn't working right now and having to pay a ridiculous mortgage - especially if the doc wants to see the patient regularly.

I was thinking yesterday morning about contacting his doc and seeing if he would be into doing something totally out of the box. Phil gave me his contact info, and I was thinking that when I see my doctors, there is nothing in our visits that actually requires me to be there physically, so I was thinking of contacting Phil's doc and proposing that maybe I could be his first on-line patient. We could have visits using Skype, and then I could actually have a Weg Specialist watching over me. I could still see my doc if I actually have something that needs to be looked at in person, but for the main stuff, he could be my man - if he's into it of course.

As far as my symptoms are concerned, I seem to be doing a lot better than a few days ago. So I think I'm going to hold off and see what happens in the next few.

Thanks again, and keep it coming. Never stop.

That Skype thing sounds like a good idea Marta. I know that in Saskatchewan we have a thing called Tele Health where you can have visits with your doc using video conferencing. I will mention it to him when I see him Friday. I don't think he would say no to that. He is very busy though, but is very understanding and compassionate as well. He always returns my calls within 24 hours, but usually by 6pm.

elephant
09-09-2010, 09:25 AM
Your blessed Phil to have a doctor call you so quickly.

marta
09-09-2010, 09:32 AM
Thanks Phil. That would be awesome.
No kidding that's a good doctor, that's unheard of in my experience.

Sangye
09-09-2010, 11:58 AM
Marta, that's a great idea! I actually heard a segment about that kind of thing on NPR last week. They're using it to get medical help to remote places in Alaska. I know you'll find a way to make it work, either with Phil's doc or a VF doc. And now I understand why you can't travel those long distances. I won't stop nagging, don't worry. :smile1:

elephant
09-09-2010, 08:34 PM
Sangye, you are too funny. Your wit never stops!:lol:

marta
09-10-2010, 04:57 AM
Yeah, I was thinking that it's a new world now with the technology, and the way that we see our docs is still 'old world'. They are doing remote surgeries so why not remote consults? It's way less tricky and could open the door to more people getting the proper treatment.

Nag on golden child.

Sangye
09-10-2010, 07:54 AM
ROTFL... :laugh:

jola57
09-10-2010, 10:19 AM
Wasn't that a good movie? Marta, I wonder if the video conference is a possibility. I have looked into the billing roster in BC and can't find one for a vide conference but there is one for a phone consultation so it will be interesting if you can find a specialist that may be from another province do a video call. My suggestion would be to go thru your GP or rheumy, because you will have to have an AB doc send you for blood tests or any other test that the wegs specialist needs. Our health insurance is provincial not like private US or in UK so different rules apply.

marta
09-10-2010, 02:30 PM
Those are great points Jolanta. I'll see how things come out, and maybe that can be something that we can either go around or push for some changes to make specialist more accessible within the way the system works. Who knows. There is all sorts of stuff going through my little pea brain that I would have never thought I'd be thinking about, so why not. Worst that can happen is nothing.

jola57
09-10-2010, 05:11 PM
I'm with you. I too get frustrated that I don't have access to a specialist. There are many questions that I have which my GP or my rheumy just don't know the answer to. I don't want to alwyas have to go to the net to find them out. If I could get a consulting doc from somwhere who conferences with me and gives his report and suggestions to the GP and rheumy I would be better off than I am now for sure.