GCA Update and...Cartoon Diary!

[Cobalt2sister]

I haven't posted in a bit although every morning at 2:30am my HU digest comes in (and of course, because of pred i'm awake) and devour the posts which I so look forward to. They are so helpful and give such a sense of supportive community.

Here's update. Saw new rheumy. Previous rheumy i only saw once and she kept me at 35mg pred (down from 80 in March when i was diagnosed and had eye issues). New Rheumy did extensive history, exam and some 26 blood tests!! (19 vials of blood exactly!!). Interestingly she said anyone on prednisone should be taking antibiotics to prevent development of pneumonia: Bactrim which you take until you're at 20 mg pred. Anyone heard that before?? This is first i heard of it but i could definitely have missed posts about it. I can't take Bactrim so she'll find something else. She's holding off on Actemra as long as i can be reducing prednisone successfully and she tapered me from 35 to 30. Had difficult few days at that but doing ok now. She has me back to blood lab in 10 days after which she may drop pred lower. I'm not happy to have it dropped after only 10 days. Seems too soon??

Anyone have crazy nose bleeds?? Have six weeks of almost daily, sometimes twice a day nosebleeds. Although I take Plavix a blood thinner never had problem till took Pred and I did read because of skin thinning it can cause nose bleeds.

So far feel good about Rheumy. Lucky that, also although neurologist thought my ptosis (droopy eyelids) was myasthenia gravis my tests the other week say i'm fine. I'm so grateful!! My sleep improved from 2hours a night to 4hours a night. Still fatigued but overall think im doing well (grateful !)

I wanted to comment on how much i loved the positivity of Tango Charlies post and the practical suggestions which are so meaningful.

For myself I was going to share what I do in case its do-able for others. I keep a diary all in cartoons because it brings a lightness and humor to what might otherwise be a harsh reality. Seeing a Buddha Belly in a cartoon version of me makes it more tolerable than just noticing prednisone horrors and bemoaning them. Yes, I'm an artist but cartoons are accessible to all...think stick figures and humorous captions and notations!!

I loved TC Buddha Belly instead of pregnant belly. I have Buddha statues in my apt and am a lapsed meditator!! and it is a wonderful take on an otherwise disconcerting body feature!

I also found i could counter the deprivation feeling of restrictions in eating by using these small (2oz, 4oz) pretty China bowls...all different shapes. The collection of the filled bowls on a tray even though the portions are tiny is appealing enough to give me a sense of a satisfying meal! A lovely dining experience!! ....But yes, I would love more food ha ha....

Well, sorry to have rambeled on so much. Thanks for listening! Hoping for the best for all of you..health, wellness, happiness and staying cool and safe.

[piglette]

I am none too sure about your new rheumy’s suggestion of taking antibiotics in case of pneumonia? I assume she is charging for the 26 blood tests. I wonder how many were really needed? I suppose on the other hand it makes one feel she cares.

[Cobalt2sister in reply to piglette]

Hi. Thanks for responding. A lot of the tests were to rule out other autoimmune diseases...lupus.sjorgens, etc basic panels, hepatitis, tb,..because I'm brand new to her I think she wanted a detailed account of my health and yes, probably many were unnecssary. They're billed to my insurance. She spent a lot of time going over history so I think that context is important to her. Well see what happens down the line.

[piglette in reply to Cobalt2sister]

At least you know what you have not got! I hope you have kept copies of the results.

[Cobalt2sister in reply to piglette]

Yes I kept copies of results and have questions on a couple of them which ill follow up with her and also primary care doc. I know for most of the " off" readings its the prednisone that scews results. Thanks for replying.

[piglette in reply to Cobalt2sister]

Well done, always useful to have them kept safe domewhere.

[PMRpro Ambassador]

The abx for pred users is something that worldwide is used mainly for other forms of vasculitis and rarely for GCA, certainly isn;t used much in the UK or here in Italy as far as I know. There have been one or two people whose rheumies have mentioned/used it on the forum in the best part of 10 years. It does seem to be used more in the USA but, even then, not widely. I have to say - after 13 years on pred and not particulary low doses but not over 20mg, I have had no Bactrim and no problems (it is an unpleasant antibiotic).

The nosebleeds - pred makes capillaries fragile and the combination with Plavix means a broken capillary probably will bleed a lot - and once it starts, the place where the clot has formed will break more easily so it happens again and again. It may need to be cauterised.

[TheMoaningViolet]

Hi, I don't want to say anything to make you doubt your new doctor's approach, but I certainly would not take antibiotics unless my life was in danger. Certainly not prophylactically. Good luck, I hope the tapering goes well.

[Cobalt2sister in reply to TheMoaningViolet]

No I'm glad you're open and honest about your thinking about rheumy recommendations. Appreciate it. No, I had decided not to take the antibiotics. Thanks for your feedback.

[HeronNS in reply to Cobalt2sister]

I'm so relieved you made this decision. In an era of growing antibiotic resistance it seems a bit foolish, to say the least, to use any antibiotic exept for the purpose of treating a specific illness. Not to mention all the possible bad effects of keeping your natural microbiome constantly suppressed!

[DeepThought2]

Bactrim is used here in Germany as prophylaxis against Pneumocystis jirovecii infections which is an opportunistic pathogen that can cause pneumonia in immune deficient patients. I also received it when I took a pred. dosis higher than 20 mg.

[nallufl24]

I took Bactrim 3 days a week when I was on 60 mg prednisone. That’s pretty routine here. I thought it was done everywhere until I saw that other people on here were not prescribed it. Once I got to 40 mg rheumatologist told me to get off of them.

[SheffieldJane]

All absolutely relevant lovely stuff. My GPs are very reluctant to give me antibiotics for anything. I barely had them in my life before, now I am plagued with UTIs, nasal, sinus and eye infections, which all need antibiotics. We would love to see one of your cartoons at least. A picture tells a thousand words. X

[Cobalt2sister in reply to SheffieldJane]

Thanks for your reply. I'm going to muster the courage to "defy" my doctor and not take the antibiotic! I was surprised when she said it as protocal. Would love to share cartoon but have no idea how you upload pic to site! Any instruction appreciated! So sorry your plagued by infections...is that from pred? I'm hoping for you steady healing. Hang in there and thanks.

[DorsetLady PMRGCAuk volunteer in reply to Cobalt2sister]

Have replied to your latest post…

[HeronNS in reply to Cobalt2sister]

And bone meds are also prescribed to people on pred "as protocol" even without a baseline DXA scan. No wonder so many people are overmedicated!

[SheffieldJane]

This a convoluted dyslexic way of doing it. However, photograph your cartoon, send it by email to yourself. Press on the link until it offers you options, choose save link, return to the forum, open a new post, give it a title, then press again in the main space for your post and choose paste. You should then have one of your cartoons. I have an iPad but there will be equivalent methods.

[Cobalt2sister in reply to SheffieldJane]

Oh thanks!! A challenge for me but ill give it a try!

[Grammy80]

Thanks for taking us on the journey! I thought your post was cheerful and also would love to see a cartoon✍🏻✍🏻 The important thing to me is that you are finding ways to make the roller coaster ride a bit less bumpy and downright entertaining. Might be worth publishing that journal in a year or so. The new rheumy sounds really thorough!!

Think your idea of small bowls is brilliant~! I've lost another four pounds even while sucking up the steroids....mostly attributable to root vegetables...anything I can think of goes in the crock pot to the brim with plenty of seasoning.💕

[Cobalt2sister in reply to Grammy80]

Oh the root vegetable crock pot sounds great...such a yummy idea! Bravo to you for weight loss on steroids!! I was doing well until this month when I started expanding! ( and diet cheating unfortunately) so back to work on my eating and a bit of self discipline. I find with only 2 to 4 hours sleep I'm up so many hours that there's more time for small meals ha ha..be well and hang in there...

[Grammy80 in reply to Cobalt2sister]

When I wasn't sleeping...peanut butter ruled~!! My rheumy told be not to even worry about weight while on steroids. I gained 100 pounds, I dropped about 40 or so for some unknown reason...and now I've dropped another 30. I'm still big for me....wear big clothes like I do and feel thin~!! I'm never buying another article of clothing till I've been off steroids for six months...that should be somewhere about my 83red b-day!!! So...who's looking?Who cares!! My bloodwork today was great...but need protein...Peanut Butter?💕

[PMRpro Ambassador in reply to Grammy80]

It is such a shame rheumies don't realise the weight problem needn't be as bad. It doesn't really matter in some ways but it does in others - contributes to diabetes and high cholesterol for example - but also mental aspects of PMR/GCA

[Grammy80 in reply to PMRpro]

That is so true! My general practitioner was always hounding me to lose weight and felt like all my problems would be solved if I was thinner. He is also my rheumatologist physician. But he just did not want me stressing about my ways although he did qualify it by saying that doesn't mean you can have ice cream every night! I have blood drawn yesterday and the only fly in the ointment was my sugar. I'm okay but I've got to keep my eye on that. The best blood work I've had in a long time only a few things out of whack.xx💕💞

[Cobalt2sister in reply to Grammy80]

Bravo for weight loss. Amazing accomplishment. I'm with you: peanut butter rules...better protein than any meat! I've been sneaking spoonful here and there of it to keep me happy! But I think the sneaking is unnecessary...just go for it! Love your attitude: whose looking...who cares. So happy your bloodwork is good. Well, take care and " we'll talk again soon"...

[Bfp1]

Hi from London. I have had v similar experience. I had nose bleeds - so exhausting holding nose so much. Got it cauterised and ten minutes in I was a new woman. Pred - yes, sleeplessness, moon face. Thin skin. I don’t like pred - so I tapered to 4.5 and I got my face back. I am in colomycin twice daily to prevent pneumonia- no result so far - been in hospital jn dwc with pneumonia and then in June/July. I love the plot and chest goes on one. I am at home now pushing off another attack . I have a cpap - it helps. You are not alone - I have been down your street and am still there. We are all different but today - I am with you - take care - I inhale this drug and it’s just a fancy nebuliser. I picked up lung disease forever so whatever I can take to prevent pneumonia bring it kn. With love

[Grammy80 in reply to Bfp1]

Don't you just love that CPAP machine? I've been having an affair with mine for 18 years! There are some issues we can solve💕

[PMR2011]

My journey has lasted 11 years so far. PMR and GCA. High dose Pred to low dose and everything in between. Am currently on Actemra which also greatly suppresses immune response. I am in the US and not once have been put on antibiotics as prophylaxis. I did take them once for a post op infection. Horrible things, never want to again if I don’t have to! Other than that once, I’ve never had pneumonia or other bacterial infection. I believe that practice is considered outdated, as that is was got us all in the pickle of drug resistant organisms. I agree with your decision to decline. Would also love to see a cartoon. Kudos to you for sense of humor approach!

[herdysheep]

I am in my 3rd phase of crazy nosebleeds. Certainly once there is a weakness it can continue. I have had it cauterised twice. Gp reluctant to do it again if it can be avoided, so back on the nasal cream for 10 days. Wasn't that brilliant before, but we'll see. I have got quite adept at one handing plug rolling, gripping nose and ice cube removal from tray!! Toilet roll goes most places with me.

[Cobalt2sister in reply to herdysheep]

Thanks fellow sufferer! Think I need to see about cauterization....I'm with you never travel without a roll of toilet paper in my backpack! Hang in there...