[KarolH]

Hi Everyone,

I wanted to update all of you on how my appointment went on Tuesday with my Rheumatolgist. It was the longest appointment I have ever had with him and the outcome was interesting.

First of all he is convinced that the intestinal ulcers are auto immune related since I do not have a stomach to produce acid and I am on triple doses of every PPI drug known to man along with other acid surpressing meds that obviously are not working. I have been tested for everything under the sun that could/may cause ulcers and of course everything always comes back fine. It is virtually impossible to get ulcers of the magnitude I get them without a stomach to produce acid. Leave it to me to defy all odds.:lol:

Moving forward he is putting me on daily low dose Prednisone and Tramadol for the wide spread pain and swelling through out my body. I will continue Plaquenil until my next appointment in 6 weeks and then he will stop the Plaquenil and start me on Methotrexate. He does not feel the Plaquenil is helping me and we need to go stronger.

For the APS he can not put me on aspirin regimen due to the intestinal ulcers and certainly can not even consider coumadin so I have started on Plavix daily to try to control the APS issues I am dealing with.

He has ordered another round of blood work as he feels based on how I presented, things he observed and my history that now Scleroderma is rearing its ugly head.

Off the script he has ordered:

ANA, C2, C3, C4, CBC with DIFF, Comprehensive metabolic panel, CRP, ENA, Sed Rate, SSA/SSB, Urinalysis with micro, Anti Scl70 and something I have never heard of that he hand wrote on the script.....C, esterase inhibitor level.

I will go have the blood drawn either today or tomorrow and as always the lab will cc a copy to my house for my records.

I go back in 6 weeks and we will start the Methotrexate then. I would love for anyone who takes methotrexate to offer their experience on this drug and in the meantime I am busy doing searches and trying to educate myself about the next step in the process of treatment.

I hope your all doing well. I am sorry it took some time for me to post this but my mom is very ill and life is busy with chaos.

Take care and sorry this post was so long.

 

[Katharine]

Hi Karol,

It sounds like you had a good and thorough appointment. I think that, given the recent bad patch you've been in/are in, he's quite right to think of changing treatment.

Katharine

 

[onetay]

Karol,
I am so sorry you are having this trouble. It is a puzzle, that I hope you find an answer to soon. If there is anything I can do for you please just let me know. I hope you feel better soon.

 

[lazylegs]

Hi Karol,

Thanks for the update. When we were last in chat it seemed like you were showing signs of Scleroderma. Let us know the test results when you get them back.

Good luck with your new medications.

Take care,
Lazylegs

 

[greenhaggis]

Hi Karol,

From what youv'e posted it looks like a good appointment regarding new treatments and further investigation!

Try to rest if you can! I hope your Mum can make a speedy recovery too!

Love,

 

[Lily]

Hi Karol,

It sounds like your Rheumy is a keeper :yes: Good luck with the testing and also with the Methotrexate. I hope it's very beneficial for you :luck:

take care,

love
Lily

 

[KarolH]

I do agree that this Rheumy I have found was like finding a needle in a haystack. He really is a gem and a keeper too.

I must admit I am very nervous about starting Methotrexate but I was also nervous about starting Plaquenil too and that is now behind me.

Anyway, thanks again to those who replied here.:wink2::wink2::wink2:

 

[Douglas]

Howdy Karol,
Sorry you are still such a medical mystery. With my Dx of SLE I went from medical mystery to text book case. Sorry you didn't.
All best wishes and prayers for a swift and complete recovery.
Douglas+

 

[Pink Pearl]

Hi Karol,
I have been on methotrexate for 17 years. Yup.....that long! I put a synopsis of my history with it down under the cytotoxic drugs if you want to read it. If you have any questions about it, I will be more than happy to answer for you.

It sounds like your doctor is trying to do the best for you that he can. I have known a couple people who had both sle and scleroderma.

I hope you can get your health issues under control. Good luck for the next 6 weeks.
Sally

 

[KarolH]

Hi Sally and thanks for the offer to answers any questions.

I may just reach out to you at some point.