I am having a melt down. Things are not good. I have done 4 months on Methotrexate now and things are getting ALOT worse. It is not that it is just not working, but I am actually getting worse on it. When I saw my Rheumy on July 31, she told me that I needed to try the MTX for 3 more months as 12 weeks was the "minimum" at which you would see any improvement in the drug. Wasn't happy about it but I get it, there is a process (fail on 2 DMARDS, move on to a Biologic). At that time, she did say that if it got really bad in the meantime that we could push forward with the Biologics.
OK Great..but here is the problem. I have been trying to call her for a week, and all I get is the answering machine saying the office is now closed, machine doesn't take messages and if you need to cancel an appointment send a fax to this number!!!! I would think that if she was on holidays or something it would just say that on the answering machine???? Seriously, who just leaves a message like that?
I really don't know what to do here as the SI pain is getting so bad that I can't lay down on my back to sleep at night (which is how I have to lay as I have a spinal fusion L4 to S1, so I can't sleep any other way) as the pain is too intense, even in my tempurpedic bed, so needless to say I am not getting much sleep. I have always had SI/hip/spine pain, but this new level of SI pain is unbearable, and I am on long acting pain meds twice a day, have been for years from my failed fusion....I can't even imagine what it would be like without meds, although I don't think they are the right kind of meds for this type of pain. My hands have always been really bad, but they are flaring too, new joints swelling and I am losing dexterity in my hands. I seriously think I am going to lose it if I don't get some other treatment soon.
Not sure what to do here, I thought maybe I should send a fax to the Rheumy's office requesting an appointment since they said to fax if you are cancelling one???? There must be someone there checking these things? Good Lord...I would think that most people would just say that the office is closed until such and such a day to stop the patients from having panic attacks, etc. Any suggestions?
Thanks for reading....I am seriously about to lose my mind from the pain and not sleeping.....
I'm not sure where you are at (physically) but an old trickis to change the last number of the phone number up or down by one digit that will usually get an office extension outside of the "rollover" if anyone is in the office they will pick up (thinking its a spouse or similar)
I know it would seem obvious not to happen, but there may have been confusion as to who should have updated the answereing machine and it may not have happened. If worse comes to worse call the ER where your doc has privleges and ASK or ask who is covering.....
I'm thinking that your doctor's office is closed for good. A doctor that I was going to go to had such a recording on his machine. He was gone for good.
I suggest you try a fax asking for immediate attention and if you don't get an immediate answer, call your insurance provider and see if the doc is still listed as being open at that location. Does your doc have any other offices you could visit? If not, sounds like it's time to get another doc quickly!
I'm so, so sorry you're going through such a horrible flare. You do sound like you need immediate attention, so if I were you, I wouldn't mess around and give the other doc more than a day to respond. Then onto someone else. Good luck!
ACK!...things are going from bad to worse here. Pain and mobility are worse and we are now at week number 3 of being unable to get ahold of my Rheumatologist. No sign on the door, no date on the phone message, just says we are closed...if you need to cancel an appointment fax a note to this number BUT, the fax does not pick up!!!!! I have tried faxing every day! SO FRUSTRATED I do not know what to do. I thought about calling the medical association as I was doing some research on their website and it says if a doctor is closing a practice they have to give 90 days notice. I was there July 31 and was told to come back in October? So unless something has happened to her, but would you not think that most professionals would put a message on the phone or something. I really need to move to the next level of treatment and I don't know what to do.....I think the only thing left is to go to the hospital and sit for hours to see if I can see a Rheumatologist there but I don't think they would have access to all of my records there....I don't want them to just drug me up some more... I need some real relief. I have never seen something so unprofessional from a doctor (if something bad has happened to her, ie. injury etc, I take that back, but seriously, update the phone people).
I honestly don't think I am going to make it....I might just have to amputate my hands....that would solve the one problem but not the SI joint problem....*sigh* :(
Can you just call another doctor and make an appt. I see your in Canada. I know the healthcare system is different there. I had the unfortunate luck of having to bring my daughter to the ER in montreal. I manage a large dental practice in NY and that lack of professionalism is not tolerated here by patients. There are plenty of other doctors here that would take patients. I did have to wait a month to see my be dr. But at least you would be moving in the right direction. Be your own advocate that’s always my advice. Find another doctor!! You deserve better than that treatment. Good luck and try to stay positive.
Dani please forgive me, but I have been sitting here for the last hour wondering if you amputated your hands, if you would have "phantom pain" that so many amputees report. Then I was wondering if that "phantom pain" would include phantom "PsA hand pain"
Okay call the phone company and ask if you can buy the phone number....... That will let you know if they are active.
I had to wait it out between meds and it is miserable. Those months between visits and waiting for new meds to kick in are awful. You should look for a new Rheumy, while you are getting the new doc and waiting for new meds…go to a family dr for a referral and an Rx for Voltaren Gel for your hands, soak in a hot bath with 2 cups Epsom salt ans 1 cup baking soda once a day, swim each morning, and no sugar whatsoever…These things help me immeasurably!
Ann, I wish it were that simple for a specialist here in Canada. I will be getting a referral for another Rheumatologist as I have had it with this one, but I suspect it will take me about a year to get into see one....it took me that long to get in to this one!
Lamb....the sausage fingered hands are still attached...for the moment!!! Interesting thought though, now you've got me thinking...I'll never get rid of this damn hand pain!!!!
Amy...good suggestion. I do have some prescription gel that is quite a bit stronger than the voltaren gel that I use for my hands, I have been using it 3 times daily. Helps "a bit"....the bath helps a bit but the SI pain is so bad it is hard to sit in the tub.....
Crap I hate this disease!!! (and my rheumatologist right now!) but all of you guys are great for support, thanks so much!)
Dani, I'm so sorry you are going through this. What you are getting from your rheumy is highly unprofessional treatment. Can you see your GP as a stopgap? Do you live near a teaching hospital, and could you perhaps try going through emerge there? The reason I suggest a teaching hospital, is because they will have rheumatology residents on site. (I know, I know, pick a rainy day cuz you'll be there most of it.)
Finally, I think you should consider filing a complaint with the physicians' governing body in your province.
Battling PsA is bad enough without battling your rheumatologist as well.
Oh God! what a nightmare for you…no wonder you’re at your wits end. If I was in your position (I’m in the UK) I would go to A&E (equivalent to ER) And after hearing the story they would refer me on to the rheumatology team in that hoapital or at least pain management team…I call them for my own patients who are suffering and haven’t been helped by their GPs or consultants, they respond that day if they can or within a few days Do you have pain managment teams where you are?
UPDATE....Well I finally got a hold of the doctor. Supposedly she was on a conference for a month. I guess she couldn't bother to update the phone while she was away! ANYWHOO....I am finally going to be starting Humira here very shortly. I have had the TB test, and a chest xray, both negative so I am just waiting to hear from the nurse who comes out to show you how to do the injection and hangs out with you to make sure you don't have a reaction. That will hopefully be today. I was lucky that both my insurance providers paid with no special authorization required (that stuff is expensive at $1660.00 for 2 injections!!!)...thank god I have insurance! Anyway, here is hoping that it actually works and that my fat little sausage fingers are nimble enough to actually hold and operate that click pen without dropping it! Time will tell. Still feel like a big pile of cr*p but at least I can see a faint light at the end of the tunnel now.
I HOPE she learned something............ (the doc)
Great I hope you are one of the ones who gets the "quick change" effect. You deserve it.
This isn't political but wouldn't it be great if all the health care conspirasists (you know the ones saying if we get expanded healthcare, we will have its availability decided by a board...) could spend a year or more trying to get effective treatment for a debilitating disease but have to go through all the insurance companies hoops to avoid paying for i first (or proving you are sick despite what is front of them???.....
OMG, Dani. A conference for a month ... must have been in a really exotic location. Meanwhile, back at Dani's ranch things are going haywire. I'm not impressed, and I know you aren't either.
I am so glad you are getting the biologic, it is high time for you. Let us know how this goes for you.
Interesting comment, Lamb. I do not understand the American fear of expanded healthcare with the threat of panels that would ration services. For heaven's sake, HMOs are far ruthless at rationing care, as far as I can tell, than anything I've ever seen in our universal HC system. My doc says I need it, I get it. Sometimes I have to wait, but I get it.
And that doc of Dani's needs her knuckles rapped ... then she'd know how Dani's knuckles feel.
tntlamb said:
I HOPE she learned something............ (the doc)
Great I hope you are one of the ones who gets the "quick change" effect. You deserve it.
This isn't political but wouldn't it be great if all the health care conspirasists (you know the ones saying if we get expanded healthcare, we will have its availability decided by a board...) could spend a year or more trying to get effective treatment for a debilitating disease but have to go through all the insurance companies hoops to avoid paying for i first (or proving you are sick despite what is front of them???.....
Dani I suffer from horrible sausage fingers too! The thing I found that helped the most was a parrifin wax bath. Once I got on my biologic my hands were normal size after 3 shots! It was amazing, hope you have the same luck!
That's exactly right Seenie. There is NO difference. except in the Non American system everybody gets treatment (eventually)
I love my parafin bath Shutterbug, Especially this close to Halloween. I put my old vampire suit on the other night(black sweats and cape with vampire teeth)and did a "big dip" (5 layers) with both hands. it really freaked the grand kids out when they saw my hands. they were sure I really WAS a vampire.
OOPs, we've gone political and hijacked Dani's thread. 'Nuff said.
tntlamb said:
That's exactly right Seenie. There is NO difference. except in the Non American system everybody gets treatment (eventually)
I love my parafin bath Shutterbug, Especially this close to Halloween. I put my old vampire suit on the other night(black sweats and cape with vampire teeth)and did a "big dip" (5 layers) with both hands. it really freaked the grand kids out when they saw my hands. they were sure I really WAS a vampire.