Doing what is necessary....skipping Actemra

[Grammy80]

I just thought I'd share this experience in case others have to make the same decisions.

I'd had shoulder surgery, replacement, on July 10th and had to wear what they call an immobilizer to keep my arms close to my body. The only way I could sleep at all was in a recliner. Next 6 weeks I spent most of my hours and that position and wound up with a good-sized ulcer or bed sore on my tailbone. That is not the easiest spot to keep dry and medicate and treat. It was rather difficult to keep a dressing on. My primary care physician referred me to the wound clinic on August 2nd. I still go to the wound clinic on a weekly basis And it is almost Healed. After a few weeks of treatment, the doctor suggested I stop my Injections for the time being. I also still had a wound on my leg from a fall and a few stairs just a few weeks after my surgery. With some metal in both legs, blind in one eye and a heavy immobilizing sling on my right side .....I am just an accident looking for a place to happen!!!! Finally on Monday I get my physical therapy started and expect Improvement in all areas!

Actemra does increase the chance of infection when given the opportunity. A few years ago I was hospitalized with cellulitis and had to cease my injections for 6 weeks. I had my first injections after the surgery on July 20th and 27th. I just resumed injections on August 24th and have been taking them weekly since. As before when I had cellulitis, I didn't notice anything really dramatic when I stopped injecting. The only thing was an increase in my headaches which was easily handled with a Tylenol. I'm not really sure if Actemra was to blame for that???

I will finally be seeing my rheumatologist on the 14th of September. I had blood work done this week and of course, everything is normal since I am back on the Actemra. Since generally I am feeling well, I'm pretty sure I will start my reduction and taper again. My brain still thinks it's about 38 years old and wants to do this and that! So.. If you have to cease your injections for any reason have no fear.

Have a great day💞💞

[scats]

You are always so positive, I don't know how you do it, you are an inspiration to us all. Keep on fighting Gammy!ps. My brain has that problem too 😂

[Grammy80 in reply to scats]

Well Scats.... Having that problem with your brain will serve you at well!💞

[Hunter134]

Grammy you have to be the most strongest person I know.I would love to be like that!You are so positive and take everything in stride.I really admire you cause I am the total opposite.Scared of everything 💖

[Grammy80 in reply to Hunter134]

Hanging around with this crowd and this forum has lessened my fears and educated me over these past 4 years! It makes a world of difference for me when I can understand what's going on with my body and I do feel that it will all work out in the end... Just make the most of what you have! You're doing just fine.💞

[bussell]

Always good to get an update from you, Grammy. The word that springs to mind is indomitable. Onwards and upwards. Keep us posted!

[Grammy80 in reply to bussell]

That's very kind! I'll let you know how my Rheumatology visit goes on the 14th.💞

[montebello]

I echo the comments of everyone else. You are an INSPIRATION.

[Frewen1 in reply to montebello]

Absolutely

[Luciejc]

So glad to see you posting, Marilyn! I stopped Actemra twice, once when I had COVID and recently for an excision of a squamous cell growth on my leg. Can't say I noticed any side effect other than painful muscles and joints, probably due to tapering. I just want to be off injections and Medrol. That will only leave me with 10 pills and 2 eye drops. You are everyone's role model on this forum and we are so lucky to have you encourage us. Keep posting!

[Grammy80 in reply to Luciejc]

It's so good to be back. I'm glad they caught that growth on your leg. I think my rheumatologists plan for me is to continue the weekly injections if I ever do get down to zero prednisone. I have a friend who is 86 and still injects twice monthly to keep discomfort at bay. It seems to work very well for her. She makes sure that she walks for 25 to 30 minutes each day and muddles through like many of us with little aches and pains. Glad you're doing well!💞

[SheffieldJane]

we become a full time job to ourselves. I met you when you had time to paint lovely rocks. Get better soon. It must get you down more than you let us know. 💖 strong woman!

[Grammy80 in reply to SheffieldJane]

Of course it gets me down sometimes Jane, that's when I take myself out and have a good talk with ME. Like anybody I occasionally just let myself cry as well. I have a very strong faith, that means different things to different people, and I just want to make the best of what I have. I have accepted limitations.. A few years ago I couldn't have done that. But I'm more than willing to cut myself some slack now!💞

[123-go]

Grammy, you should write a book-no joke! 🥰

[Grammy80 in reply to 123-go]

HaHa....I did write one, Storyworth, just for family, but I hope to write another about an unexpected experience in Moscow in 1992. We Americans are insulated and often totally unaware of the rest of the world....I was very naive at 51!! It sure was a wake-up call!! I realized how little I knew....now I look beyond what I'm fed!💞

[123-go in reply to Grammy80]

Mmm- Moscow 1992! I’m intrigued!

I don’t think it’s just Americans who are unaware but that’s not for here 🙂.

If I may say so, if you were naive at 51 you’ve sure made up for it since. You must be familiar with the quote, “If only I knew then what I know now”. 😏

[strawclutching]

I can't believe you've been through all that and remain so positive. I'm having a good old whinge & a curse every day believing the whole world is against me. Bless you for being so cheerful and passing some of that on to all of us. 😉

[Grammy80 in reply to strawclutching]

I've been known to other and Obscenity to your to myself. Sometimes I just have to make two piles, the first pile is something I can alter and the second pile is all that stuff I can't do a thing about. You're doing just great💞

[123-go in reply to Grammy80]

You are a tonic, Grammy!

[strawclutching in reply to Grammy80]

Thanks Grammy. I'll try to tell myself that. 😀

[67Blue]

Thinking of you and your wonderful positive attitude, you were one of the first to welcome me to the site, I always remember your amazing "Get up and go" even if we often don't feel like going anywhere. Take care !

[Grammy80 in reply to 67Blue]

That's really kind and I hope you are doing well... And still getting up and going! After I fell I struggled to get the confidence up to take my Walker off the driveway! I'm sure some of the neighbors were wondering what that crazy lady was doing walking in circles in her own driveway! Well, I gave them something to look at for a while.💞

[Hidden]

What a remarkable young lady you are Grammy80💐😘

[Blackcat1M]

you make me feel ashamed, take care god bless 🙏🌼

[Grammy80 in reply to Blackcat1M]

No, no..Don't ever feel ashamed ...we all have different thresholds for different reasons...things change through the years and sometimes being brave is easier on some days than others.🙏🏼💞

[Wilson1952]

my husband keeps stopping his Actemra because he says it makes his eyes loose a litle of the sight he still has(a small amount in one eye ownly)..his neuro-optometrist says it's his eyes trying to do something that it's done before......also says if he was in my husbands place he would use the actemra and see how it goes. He took the next shot but now complaining about his sight again. Don't know what to do..talking to rhuematologist this week and don't know what he will say. Wish I could think of something positive to tell him. Have you heard of anyone losing sight with Actemra?

[DorsetLady PMRGCAuk volunteer in reply to Wilson1952]

You probably need to raise this point as a new post, not everyone will see this- only ones guaranteed are Grammy -as the author - PMRpro and myself who follow every post.

Sorry I cannot answer as have no experience of Actemra.. and worrying to hear this is happening to your husband.

[PMRpro Ambassador in reply to Wilson1952]

Blurred vision (more common) and "decreased vision or other changes in vision" (rare) are both listed as side effects. Conjunctivitis is common.

drugs.com/sfx/actemra-side-...

How does the visual effect relate to the timing of the injection? Does it last and then resolve entirely or does it get worse? I am a great believer in it not being coincidental when an unusual side effect appears related to taking a medication - it does need thinking about.

I believe that it says in one of the publications that no-one lost vision due to GCA once established on Actemra - but that isn't the same as saying no-one ever lost sight on Actemra and that I honestly don't know.

[Grammy80 in reply to Wilson1952]

I'm 83 with GCA, and I wouldn't be without my Actemra. My vision gets fuzzy or blurry in my right eye sometimes...but I have dry eyes plus anybody's eyes get tired. That tiredness and lack of sharpness is bound to happen to any one with an eye issue, I think. I just blink sometimes or close my eyes and let them rest a bit. I hope you can convince him he is better off with Actemra than without. I am 'one-eyed' too and l am willing to do anything...almost... to keep that one eye. I hope you or the rheumy can convince him. My best...💞

[Judywalks]

Thank you for sharing your experiences. Your very positive attitude encourages me.

I had a shoulder replacement one year ago and also have had both knee replacements. I started with PMR and GCA some 10 yrs ago and it’s been a rocky road with several flares along the way. My rheumatologist is not the easiest person to talk to and we disagree on many areas. I am now off Pred and she wants me to stop MTX. I am very achy most of the time and take Codeine at night and Paracetemol during the day. I am sure that if I was on a low dose of Pred I would be so much better and wouldn’t need to take the above. Rheumy and GP do not agree and won’t prescribe it.

I try to stay positive and like you my brain says 30 but my body won’t keep up! I have a faith and my husband and I run a group for people with addictions and life problems.All that helps me and stops me from falling into depression. Being on this site has helped too as I find like many that there is so little understanding generally about PMR / GCA in public life.

Thank you again and I hope you can soon start your physio and get moving again.

I am also in my 80’s so let’s fly the flag!

[Grammy80 in reply to Judywalks]

Indeed, indeed, let's fly that flag. I think the best medicine to lift ourselves is to turn to help other people; it is a wonderful thing that you and your husband are doing. One of my sons was addicted to drugs for several years and has been clean for 16 years! It is a tough monkey to get off of your back! I did start my physio and was delighted with my progress; I was so apprehensive after being in an immobilizing sling for so long... I was amazed at the movement I could have without doing any harm. I'm pretty excited about the ongoing therapy.

Right now, I am on three milligrams of prednisone plus Actemra. I was on that before my surgery, and I didn't want to rock the boat by reducing it anymore. I feel excellent on this dosage, except for an occasional headache here and there. I see my rheumatologist in the morning, and I'm sure he'll want me to start to taper again. He plans to have me continue with just the injections once I get to zero, if I get to zero. I like the idea of a couple of milligrams, maybe because I've been taking it for so long that it's a security blanket! Personally, I certainly would prefer that to codeine. Sorry for such an extended response! Keep moving💞

I would have been utterly lost without this forum!!!!

[Frewen1 in reply to Grammy80]

I have only just “discovered” you, and you are indeed an inspiration. I had the Actemra (TCZ we call it here) for the allowed year, but then it stopped. Incidentally, I’m a new grandmother and have decided that I’d like to be called “Grammy” … it reminds me of Annie Hall… 🌻

[Grammy80 in reply to Frewen1]

💞 🤱🏼💞

[Darkchocolate1]

I consulted a physician about having a shoulder replacement. He refused to do the surgery if I was on Actemra or anything similar. Were you on it before your surgery?

I just had a total hip replacement Aug 30th. How Long should I wait to start Actemra after surgery! I am on 10 mg prednisone for PMR. I want to taper lower.

Thank you for sharing, you are an inspiration. Take care.

[Grammy80]

Hi there, yes, I had been on it tomorrow for almost four years before my surgery. After the operation, I stopped the injections, and my rheumatologist advised me not to take it as long as the surgeon gave me antibiotics. I resumed the Actemra just a few weeks after the surgery when I was done with my prescription.

I wouldn't dare advise you on the injections regarding your hip surgery and think you would be best served to talk to your rheumatologist. I know infection is a concern. I have metal in both legs and now my shoulder, but so far so good! I've started physical therapy and I'm so happy to know I can do more things and nothing adverse will happen to my shoulder.🤩🤩

I hope you're coming along well after your hip replacement. I was so thrilled when I had mine to put an end to the pain but I do wish I had been a better therapy patient. Because I got lazy I never regained full strength in that leg. I'm not going to make the same mistake with my shoulder. I wish you the very very best💞