Should I stay with GP or go back to Rheumatologist?
Posted , 10 users are following.
It all began with minimal pain throughout my whole body, went to an Internist and was diagnosed with fibro. I didn't agree so I went to a Rheumatologist, blood work was positive for RF but inflammation markers were within normal range. After several exam's and blood tests, she diagnosed me with RA. Vectra DA results were 67 which is high.
Recently (08/19) symptoms of a very bad flare began. I've been prescribed meloxicam, prednisone and lodine in the past but was taking no meds at the time of the latest flare. The pain was all over my body and very severe, I seriously don't think I could have handled the pain another 48 hours. Called GP and she called in a script of Tramadol. Began taking the Tramadol, Meloxicam and low dose Prednisone. The results were remarkable except for some minor hip pain.
My question is: should I just let my GP treat me or go back to a Rheumatologist? The cost of the Rheumatologist and frequent blood test are frankly to danged expensive. Although I liked her and feel she is very qualified. My GP is also very good but can only treat the symptoms. Any advice will be greatly appreciated. Also some of you "veterans" does this sound like RA. Shoulder, hands, neck, center of back, hips, knees and feet are all affected. Mainly shoulders, hips, knees and feet. Walking with a very noticeable painful limp, luckily elbows and ankles have mostly been spared. Wrists are pretty bad also. Any comments and advice appreciated in advance. Thanks
1 like, 32 replies
colin13638 tony1965
Posted
I am the same as you
I had this period of no energy and kept falling asleep when I got home from work
And was suffering with headaches for 4 days
Rang the ruematologist and left message
I rang GP and they had an open morning
I see a GP who I have never seen before and he didnt know me from Adam
He said he would give me pain killers for the head aches
When I looked at the prescription I was already on the pain killer
Waste of time
Got a phone call back from ruematologist and she told me I was suffering from fatigue and she would get me a new appointment ( October )
She them mentioned I may get help from this site as other people who are suffering the same pain will be able to help
CORRECT this site as helped as you are talking to people who know what your going through
I have no faith in our GP so contact ruematologist all the time now
The only thing is you don't say where you live as I am under NHS and PCT
Colin
colin13638 tony1965
Posted
I am the same as you
I had this period of no energy and kept falling asleep when I got home from work
And was suffering with headaches for 4 days
Rang the ruematologist and left message
I rang GP and they had an open morning
I see a GP who I have never seen before and he didnt know me from Adam
He said he would give me pain killers for the head aches
When I looked at the prescription I was already on the pain killer
Waste of time
Got a phone call back from ruematologist and she told me I was suffering from fatigue and she would get me a new appointment ( October )
She them mentioned I may get help from this site as other people who are suffering the same pain will be able to help
CORRECT this site as helped as you are talking to people who know what your going through
I have no faith in our GP so contact ruematologist all the time now
The only thing is you don't say where you live as I am under NHS and PCT
Colin
tony1965 colin13638
Posted
Thanks Colin. Not sure what PCT and NHS is but I live in the suburbs of Dallas Texas.
This last flare really has me concerned about the future.
I'm kind of between a rock and a hard place.
Rheumatologist is just unaffordable right now. All of the blood work is VERY expensive but I'm afraid of the damage being done by not being on a good RA med. On the other hand GP does treat the symptoms at an affordable cost but it doesn't address the underlying cause.
colin13638 tony1965
Posted
Hi tony1965
I live in KENT ENGLAND
NHS IS the national health service and the PCTis patient care trust
If your GP or Hospital can't afford to pay for the medication then it becomes the PCT who cover the cost
I'm on Embrel injections that cost around £280.00 per injection that I do once a week
This is all free . At the moment but because of the financial state of the NHS we may have to start paying in a couple of years time
I do feel sorry for you because if it costs that much and people can't afford to pay then they just get worse and more pain
what a lovely place to lI've
Nice to be able to talk to people around the world and compare how to move things along pain wise
tony1965 colin13638
Posted
I agree, it is nice to talk to people around the world. I used to Facebook and had "friends" all over the globe. I don't have time for it these days.
There are avenue's for low income people to get help here in the US. Unfortunately I earn too much to receive assistance and have too many obligations to afford the care I need.
I had GREAT insurance before the ACA (Affordable Care Act) now all my insurance is good for is the co pay for an office visit.
Thanks for your concern but I'm a pretty resourceful person. I'll figure it out.
tami413 tony1965
Posted
I hear you. The ACA my insurance went from $300 to $1100 per month and pays for NOTHING. My Fibro medication Lyrica will cost $500. AND -
I got a manufacturers coupon to reduce cost to $25 - it's not allowed under Medicare/ACA. I believe they want us Baby Boomers to die.....health "insurance" sucks. Or maybe I've never paid attention because I've only really needed for child birth. I have stopped Lyrica and it's a shame it's illegal to share medications. I have a whole bottle And samples that I've hoarded in case I break down and use it again! Not likely as it puts so damn much weight on you and along with other meds - that is final nail in coffin for me not to use. Anyone have a TENS unit??? Oh so good on Fibro and RA pain at times. I got it free they insurance. Best thing I've gotten for sure.
tami413 tony1965
Posted
In my opinion you need a good Rheumy. A GP does only fight symptoms. I've been on Percocet for 2 1/2
Year as a maintenance. It helps with pain somewhat. MTX was scary and I stopped bc of an allergic reaction. BUT - the time I was on it - It was SUCh a relief from the pain!!! I felt
New again. The side effects were just too horrid and THEN the allergy. But I'm finding another Rheumy (multiple reasons) and getting on something - maybe biologic. When you have a moth pain free - you want MORE!!! And when it comes back it oddly moves around body. One day couldn't move arm/shoulder. Few days later hip/leg. Walking ankles. Hands are horrid but I celebrate small accomplishments. Even if just being able to drive, walk to mailbox, paint, etc. some days better than others. This disease makes you a prisoner of sorts - I refuse
- I'm innocent!! Not to make light but some days it's all we have hunh!! So celebrate today - I'm going to go to a Farmer's market and if enough energy -
Going to get Turmeric w/curcumin that you all have been talking about! Can't wait to try.
tony1965 tami413
Posted
Thanks Tami, I agree that I do need a good Rheumatologist. I'll make an appt Monday, for consultation if nothing else. Maybe I can talk her into some RA meds without another expensive blood test, for now.
I'm a 51 yo man and always considered myself "tough" but this last flare brought me to reality.
I'm at the point that something has to give. I'm going to dedicate all my free time to minimizing the pain, damage and emotional toll that RA has bestowed on me.
I'm glad I found this forum. Family and friends have no idea, it's good to talk with others that are dealing with the same issues. I'd like to find a support group in the Dallas/Ft Worth area but have been unsuccessful so far.
I've rambled enough. Thanks for the advice and enjoy your trip to the farmers market.
lynn15111 tony1965
Posted
Middle of the back sounds more like osteo, and I have both RA and osteo. If you read up on RA positive, you will see there can be false positives, but those who are positive have a more severe RA. I think you should get insurance ASAP especially before going to meds that actually stop RA progression because of their expense. I take a shot a week and each one is over $800. I lived on an island in Alaska and all we had were gp docs. He got me on one of the biologicals too, after a teleconference set up with an RA doc in Seattle. Being on low dose pregnisone is what is helping you most of all, because it takes away the inflammation which does so much damage. Run away inflammation can also do other damage to your overall health. Usually hands are the most common place for RA. Osteo effects the outer or last finger joint, and RA effects all the other ones, starting with the second joint. On the feet I would think it would hit your toes first and then the joints further back, including your ankles. You will see swelling and feel the joint warmer to the touch. Fatigue is another big symptom and before the joints hurt, you will have a systemic involvement that so stresses the bone marrow that your red cell count will be low, so it's like being anemic.
tony1965 lynn15111
Posted
Hi Lynn, I've been going through this for about 3 years, the last 1.5 years have progressively gotten worse.
I stay on my phone every chance I get to read up on the different kinds of arthritis.
When I mentioned the middle of my back, I was referring to the spine between the shoulder blades and neck area. Common places for RA.
I do experience pain in my hands, sometimes no able to open bottles or jars.I guess I should have made myself more clear.
Foot pain started with bunions, moved to the ball of my foot and thank goodness I haven't had had the pain in my heels for quite a while.
I think I'm like you, suffering both Osteo and RA. Not to mention the herniated disks in the lumbar region of my spine.
I do have insurance through my employer but the deductible is so high all its good for is the $35 copay for office visit's.
Ankles and elbows suffer too but compared to the shoulders, hips,feet knees and neck there's no comparison when it come to pain.
kristin3351 tony1965
Posted
Hi Tony
i live in the states too and I'm newly diagnosed with RA. I have been a nurse for over 40 years and know some of the more expensive meds you can get with a grant from the med company. I don't know if that holds true for the RA meds but I would think it should with some of them. My mom has pulmonary hypertension and is on 2 very expensive meds,(thousands a month), and she pays nothing. It is not even put through her insurance. If I were you I would contact drug companies to find out what you may get that way. Good luck. I hope you can get a grant and be pain free asap. Kristin
lynn15111 tony1965
Posted
I know some peoples' deductibles are around $10Gs so it would put a dent in your budget to have to pay that out every year but then you can itemize on taxes and in that respect it may cut back your taxes. RA docs do blood work often, mine every three months. I don't feel the monitoring is so nexessary either. When you have the option of going to an RA doc, then no gp will start ordering specific meds for that - so I'd say go ahead and find an RA doc. I think they still require two different sessions (months long) of taking MXT, which doesn't do anything for some people, before they allow you on the biologicals.
tony1965 kristin3351
Posted
Thanks Kristin, I'll try that. I know a couple of diabetics that get huge discounts on their meds also. Best of luck to you and your mother.
barbara58180 tony1965
Posted
I would cqall Rheumatologist. GPs don't know enough,
Good luck
Gloria814 tony1965
Posted
Hi Tony
Sorry to hear about your intense pain and the financial factor it plays --awful stuff to have to cope with. I also advise specialist in rheumatology. These docs deal with RA pts on a daily basis and are current on the most effecitve and up to date meds. I am very new to diagnosis so I am not sure what else to suggest.
Methotrexate is not an expensive drug but I didn't tolerate it. You would need bloodwork with most of the drugs for this disease I would think. you said you were not on any meds when the severe flare began again. I don't know for sure but I am thinking we would need to continue with a medication for life
Also calling the various drug companies and telling them you can't afford the drug is an excellent idea. I don't know about biologic medications but hopefully they have some discounts or free meds available. Some drug companies do provide help
Best wishes, Gloria
tony1965 Gloria814
Posted
icab1995 Gloria814
Posted
tony1965 icab1995
Posted
GP is general practitioner.Mine is a DO. She's very good,caring, thorough and listens to my concerns.
That's the reason I'm debating between her and a rheumatologist. $35 copay to see a very good Dr that will prescribe anti inflammatories,anti depressants and mild pain killers.
I was getting the same drugs from the rheumatologist but the visits and tests were 10 times more expensive.
My RA has progressed since seeing the rheumatologist appx 1 year ago but I have to face the facts at this point. I simply can't afford a biologic and monthly blood tests.
My hips are killing me, that's the reason I'm up so early and writing. Can't take pain meds this close to work time.
Gloria814 tony1965
Posted
HI Tony
Ah, yes--I have a 'fun' procedure early Oct by GI specialist! UGH So I can relate
I can see your dilemna re RA doc or the caring person you have now that really listens and does Rx the drugs you mentioned. I hope the RA will also listen. Maybe a triall of 2 of the less expensive DMARDS together shoud be tried. Then again I have no background in what is best, I only go buy medical books and research. My RA did ask what is my ins--and if I couldn't afford bioligics as he said many people just cannot well, then we would work with the affordable ones and get pain under control. Maybe the blood tests don't have to be monthly. At any rate, I hope you can find someone that can manage your pain. Would be nice to find a support group locally but that appears to be difficult. You could search arthritis foundation in your zip code and see if they have any near you.
I am from the Boston area though and I don't see one in the 50 mi radius according to the site
Good luck, keep posting
Good luck
tony1965 Gloria814
Posted
I may do that. It'll have to be a different rheumatologist, the last one gave me a Lab Corp form EVERY time I went to see her. I was starting to think she was getting a kickback,lol.
She did take a blood sample and sent it off and the copay was only $25. I forget the name of the lab but believe it was a Vectra DA test. You can look it up online.
I've been searching for support groups but the closest one is in Houston, 200 miles away.
A coworker of mine just had the "fun" test. He said it really wasn't that bad. He gave everyone a big laugh though. He came in the morning before the test, jumping around and playing,being himself. He's a real joker. He tells us his wife made him drink "this stuff" the Dr gave him. We all looked at each other and started laughing. I told him he'd better clock out and get home asap. About that time he got a funny look on his face and headed for the men's room holding his rear. He must've been in there a good half hour before he came out and told us he had to go home. He later told us "that was one rough ride" lol!