[Joandublin]

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:

 

[Katharine]

Hi Joan,
It's such a pity when you have a rheumy you like and they leave. I guess that's life but I bet most people never think just how important a doctor can become to you.

I really hope that her colleaugue is nice. You never know...the guy that did my asthma prvocation test the other day was so gorgeous I didn't know what to do with myself. Only trouble was he kept making me laugh which is not helpful for the test.

I mean I'm sure comptetent is far more important but comptetent and gorgeous, how about that? :rotfl:

I hope that pain sorts itself,
Katharine

 

[LolaLola]

Dear Joan, I think it is great that you have gone so low on the pred. I am allowed a fair amount of flexibility with the dose, as you say it can be a hard call to make. I wish you well over these busy times you have coming.
x Lola

 

[flutterbye]

Hey Joan,

Sounds like a good appointment overall, and some plans in place for what needs to be done, but am sorry to hear it sounds like you have several difficulties going on at the moment (((hugs)))

I always think it is better to only change one med at a time, otherwise how can you work out which one is helping, I hope that the upping of fibro med will help, and I guess at least there is a 'back-up' to try if not, I know my fibro pain is well painfull at the moment, it makes it so very hard to function doesn't it.

I find for me with the having control over the pred dose thing is a bit of a double edged sword, it's good to feel that control, but I sometimes wind up overthinking it, (although I don't take regular pred, so it's about deciding whether I need a burst) Would it help to run the descision about whether to up it by the doc, if I think I need to do steroids, at the least I will get a phone appointment with my GP and say this is how I am feeling, and think this would help, I think it's a reasurrance thing makes me feel better, having a doc say yes that's a plan, then they know where you are at and it's a bit like having the official go ahead, I don't know if that would be helpfull for you, but I think that at the core we probably know ourselves and what we need best, but are slightly conditioned to take what's prescribed as it's prescribed.

I think having the conversation about the frustration and crappiness is great, sometimes I think we really need for someone to understand that, and to take the time to talk to us. Such a shame though to connect with a proffessional to have them dissapear off somewhere else, but I am glad that you were able to talk to her today, and it sounds like she is very thourough to look at things that will help. I hope that you can connect with her colleague as well, of course he will love you how could he not!

Am wittering now, am quite full of steroids, so will stop now

Much hugs xxxxx

 

[Maia]

Overall a great appointment until you wrote this rheumy is leaving! It can be pretty scary losing a doctor that helps manage a condition like lupus, especially when you've developed a good working relationship with her.

I can completely understand your hesitation in starting Celebrex... I would probably do the same thing in your shoes.

Hope the Lyrica starts showing some benefit soon.

Take care!

 

[LoopyLoo]

It's so good to hear about someone having such a successful appointment. It sounds like she was extremely thorough and really took the time to listen. It is a blow that she is leaving but the fact that she will take the time to hand your case over to a colleague is a huge positive for you.

My last rheumy appointment was similar to yours and he was happy for me to take a certain amount of responsibility for my condition also. I see it as a sign of mutual respect! I agree that you don't want to add anything else into the mix right now as you have enough to be getting on with.

I hope you get a benefit from the Lyrica and that you start to feel better all round.

Enjoy your communion at the weekend.

Lots'a'luv, :hug:

Pam xxx

 

[keebler]

Hi Joan,

I am happy you had such a great appointment. It is so important that we have good communication with our doctors.

I hope the Lyrcia soon kicks in and you find relief.

It is good she is going to talk to her colleage about you. That way he or she will already know about you, and won't be reading your chart while walking into the exam room.

Take care of yourself.
Love,
Lyn

 

[BigSis]

Hi Joan,
Sounds like a really good appointment.........should really set you up til the next one
My rheumie too is a great believer in not changing or adding too many meds at once which is very sensible i think.......But it means the whole process takes soooooo long!

Just one question......
When you give yourself a short burst of pred, do you then go back to your original dose or do a quick taper?

 

[Clare.T]

Hello Joan
I am glad you had such a good appointment but yes, shame about her leaving. C'est la vie ! Having had such a good experience with her will have played a large role in making you the excellent patient you clearly are and I am sure the new doc will appreciate that.
I was very put out by not seeing my regular consultant this time around although it didn't make any real difference to anything. The 3 P's - Physician, Priest, Parent - on whom we depend and in whom we need to trust.

I hope you can get some relief soon.

Love and hugs
Clare

 

[Joandublin]

Hi Bigsis

Re the pred burst - I will do it like this over 5 days:

Day 1: 5mg
Day 2: 5mg
Day 3: 4mg
Day 4: 4mg
Day 5: 3mg
Then back to the 2mg

Its a small burst but it makes a big difference to me. I started the 5mg this morning so I will be back to the normal 2mg by Monday morning next week.

Luv n stuff
Joan:rose:

 

[greenhaggis]

Joan,

That's very sensible! Enjoy the weekend event!

Love Lesley

 

[karen.w.]

Hi joan!

I'm so glad you had a good appointment! ..sorry your doc is leaving though :sad: strangely enough, my rheumys registrar has recently left & I have just found out that my rheumy is also retiring too! I hope I haven't drove them away :lol:

good luck with your ultrasound & xray :luck: ...you seem to be in good hands!

take good care joan & I hope you feel some relief from the lyrica soon!
:hug: love karen x

 

[macfamily53]

Hi Joan

Oh my young lady you sure do have a lot going on and on top of it all you work((((hugs)))).I am very glad you are happy with your rhueme as that is very important to us fellow lupies.I am praying your weekend goes well for you with such an important day for you and your family((((hugs))).Take care of yourself as much as you can anyway.

Tammy

 

[Raglet]

no wonder your blood pressure was up after forgetting the bloodwork hahahaha!

sounds like you have a very busy appointment - got my fingers crossed for you that it all works out well.

My lower back pain turned out to be my sacro-iliac joints because my legs are twisted (stupid legs) - its either side of the bottom of my spine. My physio releases them for me which really helps.

What a shame the nice doc is disappearing - aint that always the way.

cheers

raglet