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Hi everyone
I had my Rheumy appointment today and guess what? I had forgotten to get my bloods done for it!
It wasn't too bad though as she had seen me as an emergency last month because of the blood pressure issues I was having so she did a complete check then. Talk about being a dumbo..... 
Anyway my BP was up a bit and she wasnt too happy so she doubled the dose of the calcium channel blocker.
She also increased the Lyrica that I started on recently as she said it was a very small dose I was on (50mg). It hadnt made any difference to the pain levels of the fibro so maybe this increase might help.
She also wanted to start me on Celebrex but Im not too sure I want to try another NSAID just yet. I talked to my GP about it this evening and he wasnt terribly happy with starting Celebrex, what with my BP issues and weight problems, but suggested that maybe I could hold off for a few weeks and see how I go. Thats what Im going to do. I'm reluctant to add another medication into the mix unless its really necessary. The Lyrica might get the pain under control so I will give that a go first. Its easier to keep track of medications and their effects (or side effects) if you introduce them at a different time so Im comfortable with holding off on the Celebrex for now.
Im down to 2mg pred and feeling a lot of pain but hoping that I can ride it out. She wants me to stay at this dose for six months until I go back. I talked to her about the notion of self-dosing with pred at times of extreme need. For example I have a First Communion coming up on Saturday on top of a very busy week and Im worried I will be too shattered to enjoy any of it by Saturday. I would never self dose unless I had my doctors permission and agreed limits etc so we agreed that I could up my pred dose to 5mg from tomorrow for a few days. She was confident enough to allow me to judge any other situation where that kind of need might arise. Im happy because it gives me some control. Of course the down side of being given this control is that it can be lonely being left to make these decisions on one's own. C'est la vie.
She is also sending me for an ultrasound on my thyroid. I have been having this pain in the left side of my throat for a few months now and there is no evidence of a sore throat according to my GP. The pain is on one side only and is in and around the gland area of the throat. Its there constantly but gets worse as soon as I lie down at night. My glands dont feel swollen so its odd. Anyway she says she will get the ultrasound done in case it might be goiter problems. She said that sometimes goiters can swell inwards. Mind you, she also said that she would lay bets that we wont find out what it is and it will disappear over time
She said 'thats the frustrating thing about Lupus'.
She is also sending me for an xray on my lower back because its causing me a lot of pain lately. Mornings are worse so it could just be that I need a new bed
but she is ordering the xray anyway.
All in all we had a good conversation. I had promised myself that I would have a conversation about the frustration and crappiness that is Lupus - and I did
. She was in talkative mood and really listened to what I was saying. She said at one stage 'you know, the worst thing is that there is no single answer to this disease. Its not like we can suddenly prescribe something and it will all go away. Its a matter of trying and testing to see what cocktail of medications will help and what will make symptoms easier'. It was nice to talk to someone in the medical field who 'gets it'.
The bad news is that this wonderful Rheumy's Registrar (who I have been seeing regularly now for a number of visits) is leaving :cry3: She is off to another hospital and I wont see her again. Its a terrible shame because I had really cultivated a good relationship with her. She did say that she would talk to a colleague of hers who is remaining on the team and ask him to take over my case. She said he is very good and he would 'love' me - whatever that meant! :hehe:
Well thats my update. Hope everyone is as well as they can be.
Luv n stuff
Joan:rose:
I had my Rheumy appointment today and guess what? I had forgotten to get my bloods done for it!
Anyway my BP was up a bit and she wasnt too happy so she doubled the dose of the calcium channel blocker.
She also increased the Lyrica that I started on recently as she said it was a very small dose I was on (50mg). It hadnt made any difference to the pain levels of the fibro so maybe this increase might help.
She also wanted to start me on Celebrex but Im not too sure I want to try another NSAID just yet. I talked to my GP about it this evening and he wasnt terribly happy with starting Celebrex, what with my BP issues and weight problems, but suggested that maybe I could hold off for a few weeks and see how I go. Thats what Im going to do. I'm reluctant to add another medication into the mix unless its really necessary. The Lyrica might get the pain under control so I will give that a go first. Its easier to keep track of medications and their effects (or side effects) if you introduce them at a different time so Im comfortable with holding off on the Celebrex for now.
Im down to 2mg pred and feeling a lot of pain but hoping that I can ride it out. She wants me to stay at this dose for six months until I go back. I talked to her about the notion of self-dosing with pred at times of extreme need. For example I have a First Communion coming up on Saturday on top of a very busy week and Im worried I will be too shattered to enjoy any of it by Saturday. I would never self dose unless I had my doctors permission and agreed limits etc so we agreed that I could up my pred dose to 5mg from tomorrow for a few days. She was confident enough to allow me to judge any other situation where that kind of need might arise. Im happy because it gives me some control. Of course the down side of being given this control is that it can be lonely being left to make these decisions on one's own. C'est la vie.
She is also sending me for an ultrasound on my thyroid. I have been having this pain in the left side of my throat for a few months now and there is no evidence of a sore throat according to my GP. The pain is on one side only and is in and around the gland area of the throat. Its there constantly but gets worse as soon as I lie down at night. My glands dont feel swollen so its odd. Anyway she says she will get the ultrasound done in case it might be goiter problems. She said that sometimes goiters can swell inwards. Mind you, she also said that she would lay bets that we wont find out what it is and it will disappear over time
She is also sending me for an xray on my lower back because its causing me a lot of pain lately. Mornings are worse so it could just be that I need a new bed
All in all we had a good conversation. I had promised myself that I would have a conversation about the frustration and crappiness that is Lupus - and I did
The bad news is that this wonderful Rheumy's Registrar (who I have been seeing regularly now for a number of visits) is leaving :cry3: She is off to another hospital and I wont see her again. Its a terrible shame because I had really cultivated a good relationship with her. She did say that she would talk to a colleague of hers who is remaining on the team and ask him to take over my case. She said he is very good and he would 'love' me - whatever that meant! :hehe:
Well thats my update. Hope everyone is as well as they can be.
Luv n stuff
Joan:rose: