A question about methylprednisolone~????

[Grammy80]

I was on 120mg of pred for about two months...the 64 per day for three months because my GCA would NOT quiet down and I was losing some of the sight in the right eye as well. When my rheumatologist wanted to start the taper second week of December, I wanted to postpone it until after the holidays....he said "the risks are outweighing the benefits".....besides harming our bones, what are the serious detrimental effects of the steroid. I've looked on line.....but most everything seems like a risk or a crap shoot? I'm down to 24mg per day and holding...more symptomatic but can still see 'fuzzy' out of my right eye. I guess I'm looking for reinforcement that losing my sight 100 is worth the risk........

[PMRpro Ambassador]

Seems a strange comment to me - nothing I have come across with corticosteroids is worse than the ultimate adverse effect of GCA. There aren't many on the forum who have been on high dose methylpred - most of us are on prednisolone or prednisone. I was switched to methylpred when I moved here - I really didn't like it and I had adverse effects with it I have never had with either form of pred. But nothing that was worse than untreated PMR.

It seems that methylpred administered as deep intramuscular injections has fewer adverse effects. And there is also Actemra - has your rheumy not considered either of them?

[Grammy80 in reply to PMRpro]

I give myself an injection of Actemra each week....my rheumy consulted with one from Portland Maine and one from Boston, Mass. I will ask about the injection because I will be seeing him in a few weeks. I sure appreciate the additional info....it has been a real stubborn case. Boom...I've never had RA or PMR not yet!

[PMRpro Ambassador in reply to Grammy80]

In that case - your rheumy is probably insistent you reduce the steroid dose because he thinks the Actemra will let you do so. That is the concept. He is perhaps unaware of the fact that it doesn't work perfectly for everyone and there is some evidence that despite being on Actemra the disease process still continues in the background in some patients and continues to cause some tissue damage. There are several pathways that can cause the inflammation - Actemra only works on one and if for you it is one of the others that is active or also active then Actemra won't do the whole job as monoclonal antibodies are extremely specific in their action. The selling point of the corticosteroids is that they deal with ALL of the inflammation - whatever their downsides.

[Grammy80 in reply to PMRpro]

Your knowledge makes me realize what I don't know!!...and inspires more questions, which is good. I just looked up monoclonal antibodies....I'd never even heard that term. What kind of tissue damage does the inflammation cause? I feel the more I know the better equipped I will be to contribute to my care. Thanks so much

[PMRpro Ambassador in reply to Grammy80]

Inflammation is causing damage to cells - and as in GCA it is in the walls of the arteries that may damage the lining of the blood vessels which provides a site for atherosclerosis to form - just as one example. The damage to the cells may also release cell contents as toxins into the bloodstream and that is partly what makes you feel unwell and flu-ey. That's very simplistic but you get the idea.

[Grammy80 in reply to PMRpro]

Thanks so very much! I have an appointment when I get home I think I'll look around the internet... And know I can't believe everything I read. But I need to educate myself more!xo

[DorsetLady PMRGCAuk volunteer]

As someone who lost the sight in one eye before diagnosis - and the other was saved by Pred - I would say there is no contest between taking the medication or risk losing sight.

The Pred side effects can be managed and reduce as you lower the dose - once sight is lost - that’s it - no return!

[Grammy80 in reply to DorsetLady]

That is the way I feel....he and I will be discussing risk management? Even though things are fuzzy....I can see the doors, light switches etc. I know where the heck I'm going.....thanks, you are awesome. xo

[Blearyeyed]

Nothing is worth losing your sight for . If you are not feeling like your symptoms are under control and aren't 100% confident that your current dose will protect your sight then don't continue the Taper and increase if you need to.

Better to do it with Rheumy or GP approval but a polite but firm dialogue over why you would prefer to take that option despite the steroid risks should suffice for a sensible Specialist .

If not get a second opinion or swap your doctor for one with thorough knowledge of the risks of the Condition not just the risks of the Medication whom will work to better health with you rather than making you feel you must butt against them.

Take care and keep us updated xx

[Grammy80 in reply to Blearyeyed]

Can I call you Bleary for short? Thanks so much~!! xo

[Blearyeyed in reply to Grammy80]

You can call me Bleary , or Bee , just don't call me early in the morning !😋😂😂😂😘

[Grammy80 in reply to Blearyeyed]

....early in the morning or late for supper~!!!!

[HeronNS]

As bones can be protected through your supplements and diet and weightbearing exercise and other potential side effects can also be managed either through diet (weight gain, high blood sugar) or careful monitoring with treatment available if necessary (high ocular pressure, cataracts) I'd say your rheumatologist is needlessly putting your eyesight at risk.

[Grammy80]

All of you make such a difference~!!! I'm also trying to immigrate to Canada to be near family and that is a huge undertaking....I'll welcome any tips there too. All of you are the best~! xo

[sondya]

Seems so long ago - 5 Dec 2016 when I was sent to the Diagnostic & Assessment Unit of our local hospital. Reading case notes:

* Methylprednisone 100mg (IV – intravenous injections) for three days.

* 60mg prednisone daily from the following day and 100mg aspirin (when I was discharged).

[Grammy80]

How is it going for you.....3 years~! Do you still take medication? Hopefully, things are stablized.