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Sjogrens Topics => Living With Sjogren's => Topic started by: susanep on June 13, 2017, 04:13:21 PM

Title: Another Diagnosis Today
Post by: susanep on June 13, 2017, 04:13:21 PM
My Rhuemy's nurse called today with my blood work results. My lupus is worse, and for the first time it showed high for Rhuematoid Arthritis. He called in Methotrexate for me to take and folic acid. I hope it helps.

susanep
Title: Re: Another Diagnosis Today
Post by: bebemoke22 on June 13, 2017, 05:29:46 PM
I am sorry to hear that. I hope you feel better soon.
Title: Re: Another Diagnosis Today
Post by: Madison Granny on June 13, 2017, 05:50:06 PM
I'm so sorry to hear about your diagnosis.  I've have Sjogren's for years now and was just diagnosised with Lupus and RA about a month ago.  I am starting Methotrexate and folic acid tomorrow.  With autoimmine diseases I think you can count on have more than one appear in time.
Title: Re: Another Diagnosis Today
Post by: SunshineDaydream on June 13, 2017, 05:54:03 PM
Bummer, susan. I hope the new treatment works well for you.
Title: Re: Another Diagnosis Today
Post by: Carebear on June 13, 2017, 09:15:20 PM
Susan, I'm sorry to hear about your news.  Definitely not a welcome addition to everything you are already dealing with.  I suppose the good news is that the doctor is dealing with it swiftly and you will hopefully feel an improvement soon.

I know you have stomach issues.  Or am I remembering wrong?  If the Methotrexate is in pill form, this can cause stomach issues.  But is it's injectable, that's not generally a concern. Just something to know so that you aren't taken aback if it happens.

Another heads up for you is to ask your doctor about routine bloodwork to monitor your liver and kidney function.  I have mine done monthly, and in the five years I've been using Methotrexate, I have not had a problem.  In fact, it has improved my quality of life in a noticeable way.  I hope that's how things work out for you, Susan.


Title: Re: Another Diagnosis Today
Post by: susanep on June 14, 2017, 12:41:31 AM
I appreciate all of your replies. I know we with autoimmune can expect just about anything to add to the list. I wonder if the pills do cause too much to handle with my gastro system if the injections have to be given by them or if they could give them by my clinic?

I will have to write down a lot about keeping up with blood work so I don't end up with more issues.

Do I have to drop the aspirin I take each day if I am on Methotrexate? I read that I will have to watch out for bleeding issues.

I am glad to hear that it has helped some of you, and Madison Granny we will be starting close the same time on it.

susanep
Title: Re: Another Diagnosis Today
Post by: SunshineDaydream on June 14, 2017, 05:15:00 AM
Susan, methotrexate is available in self-injectable form. Maybe you are a good candidate for that. Definitely worth asking your doctor about.
Title: Re: Another Diagnosis Today
Post by: Carebear on June 14, 2017, 07:21:23 AM
Susan, I inject myself once a week.  Easy as pie.  And I was terrified at first, so anyone can do it.
Title: Re: Another Diagnosis Today
Post by: irish on June 14, 2017, 11:13:01 AM
I have taken Methotrexate and did well on it. I could not take it though because of the immune deficiencies that came to light after being on it for several months. It was starting to work when thhe doc took me off of it because of bad infections.

You only take it once a week and the folic acid helps prevent side effects. Just make sure to eat something with it. Even soda crackers helps. You have been feeling so lousy lately that I guess it is no surprise that you need something to knock down the autoimmune disease. Good luck with this med. You never know, the med might even cut down on the stomach issues as they can also be caused by autoimmune. Irish
Title: Re: Another Diagnosis Today
Post by: susanep on June 14, 2017, 11:23:38 AM
That would be something irish if it helped the stomach issues. I am also glad to hear that if I needed to that I could take the injection form myself.

Thank you everyone.
susanep
Title: Re: Another Diagnosis Today
Post by: Jasper on June 14, 2017, 01:05:43 PM
Susan ..... I am sorry that you have acquired another diagnosis. None of us really wants more diagnoses.

However, there may be a silver lining to your RA diagnosis. With the RA diagnosis you qualify for all of the FDA approved DMARDS and biologics that are FDA approved for people with RA (but not for people with only a Sjogren's diagnosis). There are many of these drugs so if one does not work, you can try others. Many of these drugs work very well for Sjogren's too and you will probably see an improvement in most or many of your Sjogren's symptoms as well. You may finally feel a lot better than you have felt for a very long time.

Wishing you the best.
Title: Re: Another Diagnosis Today
Post by: SjoGirl on June 14, 2017, 02:16:36 PM
Oh so sorry to hear this. Hope that the MTX gives you some relief!
Title: Re: Another Diagnosis Today
Post by: susanep on June 14, 2017, 09:31:03 PM
Jasper I didn't know that, and I hope it does work well for me.

SjoGirl I also hope yours continues for you.

susanep
Title: Re: Another Diagnosis Today
Post by: susanep on June 17, 2017, 10:41:40 AM
Carebear I just took my first 4 pills of the methotrexate and also the folic acid. I must admit after reading all the side effects I feel terrified right now. He had also called in more of the mega doses of the vitamin d, and has several months refills on it.

susanep

Title: Re: Another Diagnosis Today
Post by: irish on June 17, 2017, 05:52:14 PM
Don't panic Susan, the info on meds will drive anybody to fear and foreboding. One just has to have faith that it will work and not cause problems. I know that I didn't have any physical problems and tolerated it well. The 10 mgm is a low dosage. I am betting that in one month you will be feeling some better. It works slowly but it seems to kick in quite soon for many people. Any little relief is welcome I will bet. Good luck. Irish
Title: Re: Another Diagnosis Today
Post by: Carebear on June 17, 2017, 06:09:50 PM
Susan, don't worry too much.  Just let your new medication do it's job, and wait patiently for an improvement.   It sounds like you have a good doctor caring for you too.  Keep us updated on your process, okay?
Title: Re: Another Diagnosis Today
Post by: susanep on June 17, 2017, 10:31:01 PM
I will Carebear.

Thanks for the encouragement.
susanep
Title: Re: Another Diagnosis Today
Post by: SunshineDaydream on September 05, 2017, 10:02:37 AM
Checking in to see how you are doing with the methotrexate and folic acid, susanep.
Title: Re: Another Diagnosis Today
Post by: susanep on September 05, 2017, 08:22:48 PM
I finally had to stop taking it due to nausea and bleeding through my skin. I called to check in with them first, and they said to yes stop taking them at least until I see him again.

susanep