This will get the star for brainfog for sure.

[Zacsmimi]

If it wasn't true, it might even be funny. 😏 But when I share these things it helps me realize they are not as desperate as it feels. As you know, I've been on the steroids for about 14 mos. I take methylprednilosone which is not prednisone proper, but it is medrol, or solumedrol.... same kind of side effects.

Now, I am a RN, have been for 25 years. Yet, PMR was new to me when I was diagnosed and it's been a long learning curve.

I went from starting at 40 mg in Jan 2016 to finally this summer starting the seesaw between 6-8 mg for a few months.... broke my foot, etc, so it's danced around a bit... last visit to rheumie he said he wanted me to really try and break through to 4 or so. Taper at 1 mg every 2-4 weeks. So I actually got down to 5 but was struggling, so ended up back at 7... today I looked over my dosing history and made quite 😧 the discovery. See, these tabs in the US come only in 4 mg size. So I have to quarter them to get 1,2, or 3 mg. Tiny but doable. Somehow, I have been counting my tabs as worth 2 mg each. When I divided up the tab I counted properly, but when the tablet was whole I counted it as 2 mg. So truth be known, I have NEVER been below 9 mgs because I have always taken 2 tabs plus a fraction ( or more). I was so upset. me, a nurse???!!!

I'm having horrific headaches that I think are probably a result of traveling last week. I took it slow, even used a wheelchair a few days... but this is my pattern. I always seem to hold up until it's over, and then crash. Hoping it won't be into a wall. 😑

[olive2709]

OPPS, big hugs don't be to hard on yourself.

[Joyful13]

As a retired RN of 37 years, I live with GCA/ PMR. I am back on 40 mg of prednisone, and brain fog is the name of the game right now. "what was I just thinking about" or "where did I leave my glasses" etc. These illnesses bring true humility into one's life. Humor is so important when all else seems to vanish. Thank goodness I am no longer responsible for taking care of others meds. anymore. We will all persevere a step forward, a step backward, but ever moving along the journey. Hope and grace lead our way. You are still a blessing to many each day and on this forum. ❤😍

I pray your headaches will cease very soon, and that balance will again come to you. Take care.

[bunnymom]

Having a sick person managing their meds is one of the craziest parts of this disease! I too crash after travel. Getting to 9 is very good. I had a Dr tell me this week I would have to be off pred for 3 months before he would do possible neck surgery. Forget that I said so I'm off to the pain clinic!

[MARION7]

Hugs...

[cjatthesea]

I'm sure it's true....it's also funny. I could see myself doing the same if I had control of my meds. Hubby takes care of them daily. They get served in a little cup with my breakfast. I've been on Pred. for 26 months....have both GCA and PMR. I've had many Flares. Was just down to 29 and after a Flare free year...was at the ER two nights ago. 250mg IV of Medrol. Along with a few other goodies. Back to my 30mg dose this morning. Praying it will work so I can continue tapering.

All this to tell you we live in the US. South Carolina and Florida. We get 20,10,5,2 1/2,1's of Prednisone. Curious as to how the Prednisolone differs .One of the few subjects we haven't researched.

Prayers for a clearer thinking tomorrow

[PMRpro Ambassador in reply to cjatthesea]

Prednisolone is the active form of the medication. Prednisone is processed in the liver and is sent off on its journey round the body as prednisolone.

Methylprednisolone is prednisolone with an added bit of structure, the methyl group. This is supposed to make it more effective as an antiinflammatory. It also means the side effects may be worse.

I was on Medrol (the brand name) for several months - it had next to no effect as an antiinflammatory (I was up to 20mg, taken at night, and still in agony until after lunch, if I took it in the morning it finally worked about 6pm) and I had a WONDERFUL black beard, muscle wasting and my hair and skin had gone mad...

Occurs to me - wonder if you would do better on prednisone? The difference for me was like night and day.

[cjatthesea in reply to PMRpro]

PMRpro, thank you. Actually, I am on Prednisone. Medrol is what they give at the hospital...either injection or IV. This time IV was used. This Flare was brought on by a cold? sinus problem? and the addition of Z-pack. In the past,, after a Flare, I have had my dosage increased to 60mg Prednisone. This time, I am trying to only go back to my previous dose of 30. We'll see how it works. Spending months tapering back down is heartbreaking and has added so many other physical problems.

Always appreciate your help, CJ

[TooSore in reply to cjatthesea]

I also had a sinus infection late Nov/early Dec. and was given a z pack. I was miserable - fatigue, teary, and achy! It took a second prescription and over 3 weeks to start feeling better. Doctor, pharmacist, and folks here said it was the infection not the antibiotics that gave me so much trouble. Hope you feel better soon!

[cjatthesea in reply to TooSore]

Thank you TooSore....I hope I am better very soon. We normally winter in Florida. We were unable to leave South Carolina in mid Jan. Our normal plan. I had Opthalmology appointments. Was left with only one cataract surgery done and not successfully. Now, will need to wait for the second eye to be taken cared of...by a different doctor. We were once again supposed to leave for Florida and am far too ill to even think about moving farther than the bathroom or kitchen. Am praying I'll be better in days. Hubby has his Florida appointments set up. I am so miserable...I can hardly stand to be with myself. You can imagine how much hubby is enjoying my company.

Hope you are better and will stay better.

CJ

[Zacsmimi in reply to cjatthesea]

Checking in with you.... have you gotten to fla yet?

[PMRpro Ambassador in reply to cjatthesea]

Yes, Medrol is the form used when a liquid formulation is required but is also available as oral.

[Zacsmimi in reply to PMRpro]

They tried me on pred first. I didn't respond well...he said my body didn't seem to utilize it properly or something like that.

[Zacsmimi in reply to PMRpro]

I did try it at first. Doc said I did not metabolize pred properly.

[Zacsmimi in reply to cjatthesea]

I take medrol not prednisone. Only 4 mg tabs in us

[Hidden]

I was merrily putting '1Mgs' into my daily box & thought they seem a bit bigger than usual, l looked at the packet 5mgs! The packs are identical & the tablets are the same colour, so that would have been 20mg instead of 4mg! Lucky I spotted it myself as l was doing it!

Happy Days!

[Rokerman in reply to Hidden]

It could've been worse Mrs N - like, the other way round..... ouch!😂

[casse in reply to Hidden]

Don't feel bad, I have come close to a half dozen times messing up between the 1 mg and the 5 mg they are so close in size and same color don't know why they don't change the color or size.

[PMRpro Ambassador in reply to casse]

Get a dosette box and sit down once a week and set out your tablets. When you get your packs of tablets from the pharmacy, write the dose on the outside of the pack in indelible felt tip pen in large letters. Take your dosette box, put all the 5mg tablets in it for the week and put that pack away. Then add however many 1mg tablets you need to use. Put that pack away.

Job done - with the right doses!

[casse in reply to PMRpro]

Thanks, I do label the bottles with a magic marker, but sometimes when I take them out to record the time I laid them on the counter and get confused because I change the dose so often but that is a good idea.

[PMRpro Ambassador in reply to casse]

If the dose is changing often then a dosette box is really very useful - you can get daily, weekly and monthly ones in various shapes and sizes and are so convenient to pop in a handbag if you are going out. I go nowhere, not even round the village, without a full 24 hours tablets in a 24 hour box.

[casse in reply to PMRpro]

Thanks, but I always take my prednisone at home although I have taken it in the car when I do bloodwork and then eat my breakfast in the car and take the prednisones and keep a spare pack in my purse in case I would stay at my daughters house that is a great idea thank you

[TooSore in reply to PMRpro]

I keep a current dose in my purse as well, just in case I realize that I have forgotten to take them when I'm already out.

[Zacsmimi in reply to TooSore]

Lol. If I kept them ANYWHERE but my bedside I would be sooo confused!!!

[cjatthesea in reply to PMRpro]

Very wise. I generally leave the house well prepared for most anything to happen. I carry an emergency packet of 100mg Pred...with GCA....one never knows. In my vehicle, I carry latex gloves and mouth guards....would hate to see someone going into cardiac arrest and not be able to respond. Just my nature to want everyone to be well.

[Zacsmimi in reply to Hidden]

So glad you caught it. I had been doing this for MONTHS

[Meg1711b]

"I always seem to hold up until it's over, and then crash" --- This is my pattern too! Or it used to be. Then I got smarter and learned that my body was doing me a favor by holding it together on a trip, and that I needed to rest for a couple days upon returning before slowly taking care of the house, laundry, and other chores. My worst case was when my husband an I visited our daughter last April in California. We hiked and were on the go a lot, and I managed fairly well. So, foolishly, thought I could try to reduce again when I got home. Really bad decision. I had my worst flare, had to increase pred and was basically non-functioning for 6 weeks as my body and mind worked through the turmoil.

Have a laugh over the tab counting and move on. It is so easy to let something like that depress you-Don't let it. We are all in this together. Hug.

[cdenoncourt]

Since you mention "horrific headaches", I feel I should mention the possibility of GCA arising. I had PMR about a year when the headaches began and ultimately was diagnosed with GCA. If you also experience scalp sensitivity and/or aching when chewing (can feel like an earache) then contact your doctor about your concerns. If you experience any visual disturbances, seek immediate help (emergency room). When I described my scalp and chewing symptoms over the phone to my rheumy he had me greatly increase my prednisone dose immediately and see him the next morning.

[Zacsmimi in reply to cdenoncourt]

I appreciate your concern. These headaches are not new, I've had them for a long time. I just have a lot more of them this year.

[Admiral06]

Hi Zacsmimi, I am sorry to hear of your suffering. I must also split 4mg Medrol tablets in quarters, and have found that pills made by Qualitest or Sandoz split more accurately than other brands. Re brain fog, you are not alone. I have an engineering background and recently got lost in the middle of a simple math problem. Please feel better!

[Doralouise77]

Just an observation.... there seem to be some nurses here, including me, who had never heard of PMR or GCA and neither had I....never ran across it in training or in the almost 40 years I worked....and I wonder if even the doctors get exposed to it in training....I know from my trips to the ER that those fresh out of medical school have never heard of it....even my physiotherapist had never heard of it....

Cheers

[piglette in reply to Doralouise77]

I did ask my nephew's girlfriend who is a junior doctor whether she knew about PMR and GCA. She said she did know, but I suspect it was just the names, I am not sure she would be able to think of them as a possible diagnosis.

[tgca in reply to Doralouise77]

I recently had the opportuny to put my name forward to work with our local medical school and will be attending a meeting soon to learn about what this involves. The students will probably be first years and hopefully this will be the ideal time to introduce them to GCA... fingers crossed that I am able to join the team of what they now call 'experts by experience' ... Ill keep you posted!

[PMRpro Ambassador in reply to Doralouise77]

They do in the UK - and increasingly so, partly due to the charity. There has been a programme in the NE where students have a couple of sessions with a patient - I don't know offhand if it is baby medical students or rheumatology specialists in training. It has made a difference in the north of England where younger doctors are definitely more aware - not least due to the active research on PMR being done in Leeds and Keele.

They were looking for volunteers a bit back and tgca mentions it - I'd be there like a shot but it is a bit far to commute...

[tgca in reply to PMRpro]

I think the students will be, as you say, baby doctors... first years in awe of service users/carers telling them a thing or two!!! Should I say teaching?

[Zacsmimi]

all Of your support means more than I can say. ❤💙