Hello everyone, being put on methotre... - Hughes Syndrome A...

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Hello everyone, being put on methotrexate to kill the inflammation anyone have this medication treatment with the APS, warfarin & plaquinil

beccafullcircle profile image
18 Replies

Hello everyone, anyone with APS been given Methotrexate for inflammation treatment along with the warfarin, plaquinil?

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18 Replies
silemoran profile image
silemoran

Yes I am on these drugs plus steroids for many years and find everything is under control . 

edgewater100 profile image
edgewater100 in reply to silemoran

I am Also on these drugs, any long term side effects from the Methotrexate? How much prednisone do you take a day, any problems with it?

silemoran profile image
silemoran in reply to edgewater100

No effects from methotrexate  on 3 mgs of steroids daily . Keeping everything good . 

beccafullcircle profile image
beccafullcircle in reply to silemoran

They have me on 10 mg once a week of Methotrexate  for 10 weeks, Plaquinil daily and 7.5 mg daily of Warfarin. 

silemoran profile image
silemoran in reply to beccafullcircle

Good hope that eases your pain I tried to stop the steroids but the pain got bad again  so since going back on them I feel much better . Hope you feel better. Soon Sile . 😊

edgewater100 profile image
edgewater100 in reply to beccafullcircle

Why only 10 weeks?

beccafullcircle profile image
beccafullcircle in reply to edgewater100

They said they want to see if I adjust to it ok, not sure the entire reason as of yet.  I know they are looking for other possible health issues.  Will let you know at the 10 week mark

Lure2 profile image
Lure2

Hi Becca,

Glad to hear from you but understand also that you have a lot of pain. I have had luck with my APS as I have very little pain. I can not help you with your last question but I wish you happiness and that you will find a solution to your pain. Hope you get good help from your Specialist.

God bless you my friend Becca!

Kerstin

beccafullcircle profile image
beccafullcircle in reply to Lure2

Wonderful to hear from you Kerstin, it sounds like you are doing very well. So thankful to hear that.  I know all will find it's way out of this pain and inflammation journey, I am making sure that this is a normal kind of treatment.  I am being seen at OHSU and they have brought in a few more specialists.  So far I have found one very good physician in Redmond that works w/BMC in Redmond Rheumatology named Dr Kahr.  He has been the most knowledgeable of all of the doctors even compared to OHSU, yet we have had to move to the valley and OHSU is doing all of my care.  They are checking me for heart valve issues this week and am doing physical therapy for joint and bone barriers, spurs in my neck and back, pinched nerve in neck and joint work.  I thought we had this under control with my self test process w/my INR and my diet being so healthy, vegetarian, no gluten, yet the inflammation has gotten worse. 

The latest diagnosis is APS, Inflammatory arthritis, ANA positive, Sicca Syndrome, possible heart valve, bone spurs/DDD & symptomatic Lupus. 

All that to say I think I really am able to claim health because my internal organs are quite healthy and I live a quality life.  I do not take any pain meds at all, I pray, soak in my hot tub, eat right, laugh, live and am working on more supersize.  However, I am so swollen, I feel like a puffy marshmallow.  I have 30 pounds to loose, yet most everyone says I look fabulous :)  The weight has been a bugger to get off and I have not ever in my life struggled with weight of any kind, always been slim and strong.  I feel weak often, fatigue is a battle, but I give myself grace and lay down, read, watch a movie, play with dogs outside.  I'm surrounded by joy and have strong faith so I do not let it get to me at all.  My emotional and mental health is blessed and happy so this helps also.  Just wish to get past the swelling, weakness, fatigue, weight/puffiness.  I wonder how many folks have these struggles? I wonder how many folks also see other things creep in later in life when it continues to progress?  The doctors said that the inflammation is at an "agressive" stage and that I need to work to protect my immunity as it is suffering.  I have a Vitamin D deficiency they just told me and iron.  They are speaking of a blood transfusion to deal with the iron...is this common? 

Looking for answers today, the pain is something that I believe I can deal with if I rest and let God take it verses all the pain meds that they continue to push on me every time I go in.  I sleep really good now, so if that is stable I do not see the need. 

Good to hear from you Kerstin, always wonderful to hear from you.  By the way we rescued another little doggie, so precious.  One of my homeless clients surrendered her to us and she is a gem, I adore her.  We gave her a new name, Izzy.  My little pack is such a joy.  We call it the Hanson Dog Farm :) 

Becca

Lure2 profile image
Lure2 in reply to beccafullcircle

It is a pity that you live so far away because I would love to see you and your Hanson Dog Farm! By the way; Hanson is a Swedish name.

I now know they take good care of you (the Doctors) and that you enjoy your life and also sleep. That is good. It is always good to hear from you!

God bless you Becca

Kerstin

beccafullcircle profile image
beccafullcircle in reply to Lure2

It would be a joy to be closer, my husband is Norwegian.  I call him my Norwegian Prince, I am happy to be a Hanson. However, I personally am a Scottish mutt :) mom said there was an Indian bride somewhere in our linage. 

I know this will have to surrender eventually and get better, so I'm eating gluten free cake today in celebration of a happy healing day coming soon.  If you would like to follow my blog Kerstin, would love to show you further our tiny house living and mobile mission bus and outreach warehouse in Oregon.  Welcome to join me on there, its wonderful to say hello to you, you are an inspiration.  This site truly has encouraged my heart through this journey.  The first week I found this site, I felt relief.  So thankful to everyone on herel.  Talk soon my friend, Kerstin.  Will message you my link as I know they dont like promotion on here.  xo

Becca

Ylmom profile image
Ylmom

Love your positive attitude! Hope you find answers:)

beccafullcircle profile image
beccafullcircle in reply to Ylmom

Kindly sending thanks...ditto :) 

MaryF profile image
MaryFAdministrator

As you can see from replies other members are on this drug, their feedback to you will be invaluable.    MaryF

beccafullcircle profile image
beccafullcircle in reply to MaryF

Hello Mary, yes this site has been such a blessing.  I joined this site back in 2014 and it has been such a benefit to my life.  The encouragement, common links and education have answered so many of the baffling components that sometimes arrive.  I am grateful, thank you so much.

PS..the concoction of 7.5 warfarin daily, Plaquinil, methotrexate, vegetarian diet, gluten free, ample hydration, healthy lifestyle, walking, positive attitude, faith, quality rest and self testing machine every two days have been a wonderful recipe for my life.  Yesterday and today I woke up with far less swelling then I have experienced yet along with no pain.  I feel like running a marathon...I just may work towards that now.  Have a terrific day, Mary and all

Becca

MaryF profile image
MaryFAdministrator in reply to beccafullcircle

Thank you, lovely feed back, and keep well.   MaryF

CJ936 profile image
CJ936

Hi, I had my first methotrexate injectio on Friday night. This is replacing the Plaqenil because it was causing glaucoma and I told the Rhumatologist I refused to continue to take the Plaqenil. She has me taking Rasuvo brand methotrexate injection 10 mg once a week and prednisone 2 times a day. I was told to take folic acid to help reduce side effects. I was not told when to take and took the folic acid and other vitamin supplements right after the injection. I have since learned that was not correct and wil take 6 day a week and skip the injection day. I know not to expect any improvement just yet, but have noticed that I am dizzy and have a cough. My concern is the cough, since I have COPD and one warning was not to use on patients with COPD. My Rheumatologist sid to try it and see what happens because the next step would be a medication with far more side effects. Anyone else having problems or concerns with the injection? Does anyone know what the next step is if this does not work?

Lure2 profile image
Lure2 in reply to CJ936

Hi, I can see you have just joined our site and I also see you are a member of another HU-group so your answer may not be relevant to our illness here which is HS/APS.

Best wishes!

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