Author Topic: Back in the Saddle (Medrol) Again . . . Sigh  (Read 687 times)

SjoGirl

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Back in the Saddle (Medrol) Again . . . Sigh
« on: March 12, 2018, 03:37:55 PM »
For those who have been kind enough to respond to my recent messages about pain and other issues here's an update. I saw my rheumy today, he thinks pain is from osteoarthritis and recommended that I go ahead and try the short course of Medrol that he previously prescribed. He had previously said to take the Medrol if needed and agreed that it was OK for me to try other interventions first e.g., PT, Gabapentin, etc.

I've been doing PT for a couple of weeks, it works but only short-term. Gabapentin dose is quite low, but not resolving the pain. I am also now having swelling in my hands and feet, knees hurt, etc. Rather than just increase Gabapentin he said take the Medrol and if it:

a. Works he will up my Immuran (because treatment will confirm that it's OA or SjS or something similar)

b. Doesn't work he will add Cymbalta to my list of meds (he said now not doing diagnosis as much as figuring out pain management).

As for whether or not to have a discectomy, he said discuss with my neurologist, but he didn't seem to think it would help because pain is in many joints.

I also ask about diet, turns out he's married to a dietitian. He said if I eat well that's enough and he only wants me changing one thing right now, which is to take the Medrol -- that way we can tell what is having an effect.

We also discussed Fibro, he said I really don't present with the typical symptoms.

So on to Medrol starting this weekend. I told my hubby to line up projects that I can complete while I feel like I can conquer the world.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

susanep

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Re: Back in the Saddle (Medrol) Again . . . Sigh
« Reply #1 on: March 12, 2018, 08:04:25 PM »
SjoGirl,
You have a lot on your plate. The fibro isn't always the same for everyone either, so keep that in mind.

Also, if you need at some point to increase your Gabapentin then you can take some at night right before bed, and you won't notice as many side effects.

I hope something helps with your pain soon.

You are in my prayers.

Hugs,
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

quietdynamics

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Re: Back in the Saddle (Medrol) Again . . . Sigh
« Reply #2 on: March 13, 2018, 10:49:23 AM »
Among other things test showed I have arthritis in right hip. Can make mobility tricky.
I did a trial off gabapentin/Cymbalta combo.. and found mobility worse.
I have a script for Medrol pack as needed for Sjogrens/Fibro symptoms.

Did not stop methotrexate and will discuss going back to higher dose. Not sure if you had tried methotrexate and had a problem. Sometimes you can try a med again later and not have problems.
http://www.medicaldaily.com/new-osteoarthritis-treatment-chemotherapy-drug-reduces-joint-pain-40-261994

Wishing you the best.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Carolina

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Re: Back in the Saddle (Medrol) Again . . . Sigh
« Reply #3 on: March 13, 2018, 02:07:18 PM »
My magic meds, over the years:

Aleve (now causes gastric stress too difficult to ignore:  all NSAIDS are out)

Cymbalta (OMG, a miracle for 6 years, then horrible side effects, had to abandoned, still grieving, but myoclonus, hard shaking of left side of body, and syncope, complete collapse to the floor, cannot be tolerated as side effects.)  Aleve and Cymbalta kept me pain free and I was spoiled!

Medrol (2 mg every other day, allows my body to tolerate IVIG every four weeks). This is a very low dose, and does the job for me.  I've been on Medrol since December 2013.  My bones are cast iron, at 76 my skin is beginning to age seriously, but hey!  I've had a good ride.   

Gabapentin (3600 mg a day, almost completely stops 'skin on fire' of my SFN, doesn't really help my osteoarthritis, go figure!)

And the newest Magic Med:  Low Dose Naltrexone.  Finally, I have adjusted (no more side effects) and have a regular dose, 3 mg, and then an additional as needed dose.  I have shoulders that must have joint replacement, hands, neck (severe DDD), knees, you name it.  But NOT hips, which amazes me.  ANY I am a complete convert to LDN.

I looked back at my 'diary' and saw that I have been dealing with very difficult pain for a very long time.  Aside of specific painful joints, I also suffer from what I call myalgia, which for me is 'long bone pain'.  Particularly in my forearms, and then general feeling awful all over.

That is now gone, courtesy of LDN.

I've had so many crises over the past three years with the terrible myoclonus and syncope for which I had every conceivable test (EEG, twice, for example, and brain MRI, meeting with Epilepsy specialist.)
I withdrew from Gabapentin and suffered the trials of the damned, thinking that Gabapentin was causing the side effects.  I had terrible sciatica in the midst of this, for which I had a laminectomy.  And then I fell and fractured my back.  Now I'm off Cymbalta and the myoclonus and syncope are gone, most of my pain is gone, and I start home IVIG in March or in April at the latest.

So I am feeling very positive after a terrible three years.   Of course, I hope all the 'bad stuff' is gone, but I'm a realist and don't expect that at all.

I hope the Medrol helps you SjoGirl.  Do some research on LDN because it is far less toxic than Medrol, and can be taken indefinitely:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

amymyersmd.com/2017/05/low-dose-naltrexone/

https://en.wikipedia.org/wiki/Low-dose_naltrexone

Keep us posted, SjoGirl,

Regards, Elaine
« Last Edit: March 14, 2018, 05:41:48 AM by Linda196 »
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SjoGirl

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Re: Back in the Saddle (Medrol) Again . . . Sigh
« Reply #4 on: March 14, 2018, 08:49:53 AM »
Hello all and thanks. I became deathly ill (literally) from Mexotrethate so don't think I'll try it again.

I had been able to get off of a bunch of meds for several months over the summer, but I believe that as they wore off my symptoms returned. I am going to try the Medrol because:

1. It's a very low dose pack

2. It's the only way that the rheumy believes he can determine if the issues are inflammatory in nature (I'm sero negative as of now) or osteoarthritis.

I will ask him about LDN after we know what is transpiring. I don't really want to take Cymbalta because I tried it once at the recommendation of my neurologist. I recalled after leaving my rheumy's office that it made me feel quite queasy and ill. Does that feeling go away after some time on the drug?

Because I am now 60 and lost a lot of family members between the ages of 60 and 70 I am concerned that all these drugs will shorten my lifespan. That said, what's the use of living if I and those around me are miserable?

Given that I am doing my best to think positively. I tend to have a very negative attitude about taking drugs, but I am reminded after looking at some inspirational quotes on Pintrest to as myself "What if it help? What if I feel better again?"

Thanks again, you are a HUGE help!!!!
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

cccourt1942

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Re: Back in the Saddle (Medrol) Again . . . Sigh
« Reply #5 on: March 17, 2018, 01:44:21 PM »
SjoGirl:

     Pain!  I don't even like the word.  In fact, I like to refer to my discomfort as that: discomfort.

Over the years I have read discussions regarding using CBD.  I have read, probably explored online more than once, then discounted it.  Until this week.  I belong to a local SjS support group and one member with whom I'm closest is a "child" my daughter's age (52).  We have almost the same aggravations but that she has RA and I ONLY have OA.  Of course, due to my age, i have some old age stuff she doesn't have.  As new people discover or are dxed with the phantom sternum pain--costochondritis--we are the "go to" people.  Our sjs aggravations are about equal.  She is more depressed than I am....as I am old.  And that's what I tell her.  Her children are grown but yet unmarried...and no grandchildren of course.

A few weeks ago i asked her if she bellieved she had costo ALL the time.  I mean, can she feel her sternum at certain spots and react to the touch.  And she said yes.  I told her I had just realized this.  Stupid on my part because the strernum has joints, hot beds for inflammation, and of course costo is inflammation.  I wondered if my inflammation was really heightening.

Thursday i joined the evening forum asking about several topics, one of them the costo...I think these girls are imbibing while chatting as we got silly over whether we were talking about costoCHONdritis or going shopping at Costco!  We laughed.  But by the end of the chat period, i had made a decision based on my OTHER question: CBD.  Discussion there, along with my local friend's information on CBD, I took the plunge---yesterday. 

Though my local friend started w' her Sis in law going to a vape shop (Dallas), she eventually asked at a well known compounding pharmacy which does her autologous serum eye drops as well.  She called me after using it for several days. 

My outcome (for purchases) were different from hers, primarily due to an ulcer i' m treating. 

The woman who has a whole health section at the store is a Registered Dietitian.  She is a Certified Diabetes Educator and her title at the store is "Health and Wellness Manager.  I was suitably impressed at her knowledge.  She wasn't pushy (i think realizing i am so old).  She explained the Green, Blue, and Gold of the brand I purchased. She recommended Blue level and in a paste form.  It actually comes packaged in a syringe dispenser.  You squeeze out a tiny amount on your finger and rub it under your tongue...etc, etc.  It's Real Scientific (Hemp Oil) Blue label.  You can read about the various gradations online of where the oil is derived from the hemp plant online. 

I did not buy stock in this company, I do not get a discount for selling this product, nor do i know its relief for the long haul. 

The above product isn't my major find from this  visit and the company.  That would be the green label salve.  I jammed my knee about 9 months ago, and have had a gel shot...and am due another.  But now...BOTH my knees bother me.  I bought the salve and slathered it on one knee yesterday (you can't slather as it's too thick.  (and it's expensive!)  This a.m. I put it on both knees.  I ran out for a couple of hours around noon..and decided to put some on my sore hip spots.  By 3 I needed more on my knees (it had been nearly 8 hours) but now, 4 hours later, my hips still feel great.  I ONLY put it right on the specific parts from which the pain was emanating.  While i was out, I knew i needed to share this with SjoDry.  Is it as wonderful as a medrol pack?  No.  But after my ulcer presented itself, my rheumy wants me on methotrexate and off prednisone.  I've been cut off of celebrex too.  I am NOT ready for the methotrexate.  So i thought i'd give this a go. 

Just a share.  If interested, inquire online.  btw: I did check prices online...and same discounts offered at the drugstore are same at RSHO site.  There ARE other brands, etc, i only checked this one. 

Understanding the hemp oil properties was major to me.  I knew it wasn't cannabis ...after all...i live in Texas.  :)
ccc


« Last Edit: March 18, 2018, 12:13:44 PM by cccourt1942 »
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

SjoGirl

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Re: Back in the Saddle (Medrol) Again . . . Sigh
« Reply #6 on: March 18, 2018, 03:32:07 PM »
Ccourt thanks. I started a Medrol pack this weekend and feel like a new woman. So much of the pain and swelling have subsided. That means that my pain, for the most part, is inflammatory (with a good dose of neuropathic). My doc said is the Medrol worked next step would be up my Imuran, unless I backslide that looks like where I will be headed. I'm also due to increase Gabapentin dose, but was waiting to see how Medrol effected me (my rheumy only wanted me to change one thing to see if it had an impact).

I meant to ask my rheumy about medical marijuana because we are about to have a dispensary open where we live. My pain is all over, localized drugs like Voltaren Gel help some and I am comfortable sticking with that. I forgot to ask and would be OK with upping the others as I've had few bad side effects from either one.

FYI I found a great book about Chronic pain at our library, I will share the name in a separate post.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.