i just feel that the clinic are not interested in what the problems are, just so long as they are giving out meds of some sort. I feel really down right now, trying to carry on as normal and continue doing everything, and just being told to give it time. Thanks everyone,Barbie, as well as the mtx, are you bein prescribed some anti-inflamm. meds such as Celebrex, Naproxin, or something like that?
Hope you get some answers soon and better treatment, tho it sometimes takes time for docs to find just what works best with any particular patient. But, you do need to have health workers who take an interest in trying to help you. I was fortunate when first dx'd, but did eventually learn that I had to do some research myself. Sites like this are so good and where I found most of the useful information!
Hi Lorrie, thanks for replying, I am not on antiinflamatories, as I have asthma, which is controlled by meds but I have been told not to take them. I was put on naproxen originally, before diagnosis, but then taken off them again.
I am seeing my regular GP on Friday and will ask him if his partner has tried to arrange an earlier appt, if not then maybe he can do it. I can call them myself, but sometimes the receptionist is difficult to talk to, there are 3 different ones that seem to be in the department, so it depends who is there.
When I go every 2 weeks for bloods I dont feel I can talk to the nurse, not because she is too busy, but she seems like she just wants to get the test done, if I ask questions she just says that the tests show all is ok. I tell her the pain is the same, and not controlled, but she says I have to give it time. I have had 3 cortizone injections, not directly into joints, and these made no difference, although I was told by a friend that you should rest after it is done, and no one mentioned this. I work full time with children, so thats not really practical anyway. I get home and am in so much pain,all I want to do is go to sleep. I keep saying this cant be right, but they dont seem to listen. I have got some great info from here, and also lots of support from people on here, more than I get from the rheumy clinic. I am very grateful to all on here for your help
I'm not sure of the protocol in England, but in the US you are legally entitled to copies of all your test results. In fact, when my doctor writes up the blood lab order I tell him to write "cc to Pt" [copy to patient] on it so that I can get my results directly from the lab. Many years ago I did not do this and when I changed doctors I had to pay a small fortune to have all my records copied. Now I like to keep track of it all myself.
One thing I have learned is that you must be proactive in your treatment. That means getting a doctor who understands that you wish to be informed and an active participant in treatment decisions. I've "fired" a couple doctors because they didn't want to bother with this.
Being informed and educated in your disease[s] will go a long way in the success of your treatment.
You mentioned that you want to sleep when you get home. It's possible that this lethargy is due to the inflammation going on. I'll be the first to admit that sleep is a great anesthesia!
Learn to pace yourself. Manage your time, your activites.
Above all, don't let the health providers intimidate you - essentially they work for YOU and have a responsibility to provide you with information and answer your questions.
Again, I'm aware that your universal healthcare works differently, but indifferent behavior from healthcare providers should NEVER be tolerated.
Last but not least, I, too, have asthma, though very mildly. I take Celebrex, max dose, twice daily, with great success.
You take care.
Sam thanks for the advice. I know I am entitled to copies of results, and to see them too. its just I dont feel comfortable asking!! Our system is probably similar though in that way. I hope to get back to rheumy soon, and get things sorted out. I cant keep working like this, I feel too ill, maybe I should cut back anyway, but its hard when parents depend on you so they can work.
When I go next I will tell them that I am not happy with how things are, and I want it sorted, I wont leave without the consultant listening to what I have to say, I know you are right, and I have to take control. The problem is that I assume they know best, and then I just dont say anything. Not any more though!!
Re the celebrex my husband is on them, also for RA, and he takes them with no ill effects. He also has a heart condition. If you take them and have asthma also, then I dont see the problem. As soon as I get an appt I will post on her.
thank you everyone, I find lout more on here than at the rheumy clinic.
Barbie,
That's good to hear - that you will be adamant about getting answers. So many of us were brought up to believe that MD's are god-like and the truth is that there are good ones and not-so-good ones. In the end it does no good to place unquestionable trust in any of them until they've earned it from you.
Also - you mentioned 5 mg of folic acid once a week. That's contrary to what I've been told. Depending on your weight you probably should be taking 1-2 mg DAILY, 7 days a week. [MTX is once a week, but the Folic Acid is daily.] But I'm not an MD, so check with your doctor.
I'm a frequent flier when it comes to cortisone shots. Kenalog is the best, I've found. But here's the rule in the US: no more that 2 long-acting cortisone injections in one joint in a twelve month period. Any more than 2 injections in that time frame will wear down the tissue and could potentially cause a tear in the tissue [which is a lengthy recovery].
I think I've already mentioned that time management is of great importance. I take MTX on Monday nights, so I know that late Tuesday and into Wednesday I don't want to over-exert myself because frankly I'm a bit lethargic. So I plan around that. I keep lists in my head: one for tasks requiring lots of energy and another for low-energy tasks. It might take a while, but I think in time you'll find your stride.
Again, I'm glad you're going to be your best advocate by taking control of your disease.
Sam12342009-11-08 12:53:13Hi Sam, I have read on here that taking folic acid once a week is unusual, but thats what the rheumy ordered. Something else to check up on!!
I take the folic acid on Thurs and the MXT on Friday, so luckily I have the week end to recover.
I work on Mom Thur and Fri 7.30am - 4.30pm
Tue and Wed 8am - 6pm (2 babies) sometimes another day is needed, I work from my own home with the one child, and at the little boys home on the two days.
Its getting very hard now, very tired, ankles constantly swollen and always pain in feet and hips.
The sooner I can get all this sorted out the better. Thanks
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