Well something has to change...month 4 update.

[Tj2017]

Hello all,

You might remember me from my frustrated and angry post 2 months ago. Thanks to this wonderful forum I have learned to pace and start to accept the new me. Unfortunately even though I started a low carb, sugar free diet I have gained over 15 pounds since the middle of June. Of course all of this weight is in my face, neck and trunk area. I barely recognize myself. The extra weight is causing high blood pressure and irregular heart beat, ugh.

I feel this overwhelming need to take control. Of course this is not realistic as I can't control my disease. I have managed to reduce to 50 mg a day, yet experience about a 4 to 5 level pain with chronic fatigue. Blood test still show mild anemia yet inflammation is under control.

Good news is there are periods of time where I am feeling better and more like myself. This usually occurs around the third day after taking my Actermra injection so I am hopeful this medication is pushing me towards remission.

Tomorrow I start a three day juice cleanse to be followed by a plant based diet. As we all know the extra weight only adds to our laundry list of health issues, so after discussions with my GP this seems like a good actionable step on my part.

I know this is going to be a struggle as I am totally always hungry on the prednisone. I feel for all those who suffer from addiction to food. It is not something to be taken lightly, especially those with diabetes.

I also have a job interview which would allow me to work from home. It would be perfect so good wishes would be appreciated. I'll keep you posted.

Thanks again everyone for your support.

Fat and trying to be happy and grateful,

TJ

[Sandy1947]

I wish you all the best. Diet is always a struggle at the beginning then it becomes part of your routine. What helps me is eating every few hours, small healthy meals. I even get up during the night, eat and go back to sleep. Keep in touch with all your forum friends.

[Tj2017 in reply to Sandy1947]

Thanks Sandy for your reply. I thought I had the weight issue managed. Than the pounds just rolled on. I'll keep you posted.

TJ

[DorsetLady PMRGCAuk volunteer]

Hi TJ,

Good luck with diet and job interview.

You may not be able to control GCA, but you can control how you deal with it, and from what you say, you're already on the road!

[Tj2017 in reply to DorsetLady]

Hi DorsetLady,

It's always a pleasure to hear from you. I am trying. The first two weeks after vacation were very frustrating and painful. I had a terrible relapse mostly PMR pain. This is the new me for awhile.

Best

TJ

[Rimmy]

Hello Tj

Everything you are experiencing and all the frustrations are shared at least in some part by many of us here - but it is great to hear that you have a 'plan' to get things more together for yourself and this bugbear of a 'condition'. It might be a euphemism but I prefer to ask myself " I wonder what condition my condition is in !?" than " how is my 'disease' today " !?

It can sometimes be the small things that keep our heads above water - like a laugh - even at ourselves when we are most miserable. The idea of several days of a juice fast sounds full on to me and no 'laughing matter' - but I will always find an excuse to fit food in . TI am lucky I guess that the low carb stuff has worked quite well for me but I realise not everyone has had the same experience - so all good fortune with this strategy.

My partner is a vegan and although I eat some chicken and fish - I am also a pretty big consumer of vegetables and lately have become 'addicted' (even in a colder than usual Southern OZ winter) to a HUGE evening dinner plate of 'asian' style coleslaw with cabbage, onion, fresh kaffir lime leaves (these very finely chopped), red capsicum, carrot, coriander, de-seeded red chillies (as many as you like or not) sometimes broccoli and other greens in a lavish dressing of lime/lemon juice, apple cider vinegar, peanut oil, sesame oil and a small splosh of fish sauce (if you eat fish). Otherwise veg soups or BIG stir fries with a bit of lean protein have worked for me to lose and maintain a 12kg weight loss. Perhaps not everyone's style of food - but at least with plant-based food it is difficult to overdo things from a 'health' perspective anyway.

All good wishes for your forthcoming interview !!

[Tj2017 in reply to Rimmy]

Thanks Rimmy,

I have been eating mostly salads which I am learning to enjoy. I think removing the dairy will make a difference for me. I hope so. Thanks for your good wishes.

TJ

[SnazzyD]

Well done! One thought- What is the sodium salt content of your diet? I have found it takes very little to get fluid retention on top of any jelly belly which acts as a double whammy for weight.

[Tj2017 in reply to SnazzyD]

Hi SnazzyD. It is good to hear from you. I don't know my salt intake. My sodium level was normal on my blood work. Guild retention was one of my later symptoms. I really blew up. Now my rings and such fit normal. I might be holding some water. Time will tell over the next few days as I expect the water weight will go first. I do crave salt with my salads. I'll need to watch that when I start the plant based diet.

Best,

TJ

[PMRpro Ambassador]

And do please be careful with your protein intake - pred-ravaged muscles do need their proteins.

Good luck with the interview.

[Tj2017 in reply to PMRpro]

Hi PMRPro. It is good to hear from you too. My protein was low on my blood results which really surprised me as I was eating chicken twice a day. I now have high protein tofu which I take or treat it like a supplement to be sure I get sufficient protein.

Best,

TJ

[PMRpro Ambassador in reply to Tj2017]

I struggle a bit with tofu - though I did have it in S Korea done in a very delish way!

[barbthy in reply to PMRpro]

So far (since June) I have managed to maintain my pre pred weight. I am focusing on low carb and trying to focus on protein and calcium rich foods. For breakfast I make a veggie omelet with 1 egg and 1/2 cup of egg weights. So hard not to eat the goodies, my husband is a pastry addict and always has treats every night.

[Marilyn1959]

Good Luck with the job interview TJ!

[Tj2017 in reply to Marilyn1959]

Thanks Marilyn. I would be a life changer for me right now and a good fit for the new me

Best,

Terrie

[SheffieldJane]

You sound like you are in a much better place and you are controlling the things you can and accepting the things you can't. I can delude myself that I look nice until I see a photo then it's gloom for stupid ages! I look like the cartoon character Pansy Potter the Strong Man's Daughter. ( in an old UK comic).

The very best of luck with your job interview!!!

You are sounding like a winner.🍀

[Tj2017 in reply to SheffieldJane]

Hi SheffieldJane,

Thanks for your good wishes and support. We took pictures over the vacation and honestly I don't know who that person is in the photo. I have to remind myself it is only temporary and one day I'll look back on those pictures without wanting to cry. My cheeks are so so big. I loose almost all my facial features. Oh well.

Best,

Terrie

[Hidden]

As 30 year veggie there are lots of nice things to eat. Please forgive if grandma and suck eggs moment comes. I am sure you will have got a nice cook book or two to help you have some variation. Tofu good if cooked well well marinated in soy sauce garlic, mirin and fried really hot and crispy on outside. Like pastA and rice its there to carry taste of sauce or dressing. A lot of the bean and legume family have good protein content. If you can tolerate soya then that is good for protein. Tahini good for calcium. I add nutritional yeast to meals. And I have gram flour cracker habit for those days when I fancy crisp/cracker/chilli type treat.

I tend to use balsamic and a touch of low salt soy sauce or similar as salad dressing and or a squeeze of lime.

Hope Havent bored you too much and you can manage to balance all required proteins fibres mineral etc. good luck 🐖🐷🐴🐏...the animals thank you. lol

[EdithWales]

Hi Tj

In the first two years of GCA I lost 7 kilos because I was determined to not put on weight. I have always been vain and recognise my face isn't up to much but my body was

good.

I achieved this by mainly eating

smoked mackerel and grass. I got down to 3 mgms then flared after which I reverted to the bad old days and ate everything that wasn't nailed down.

Another 2 years plus.

I put the weight back on and don't care.

I delete all photos of myself unless I wear sun glasses, I told you I was vain

Now suffering from a terrible episode of cystitis and have to see a Urologist. My brains are now in bladder and the GCA is on the back burner, I am now down to 6mgs and that's where I am staying. What I have learned is just deal with today,1 will reduce again when I feel better.

Good luck with the job interview, as long you are clean and tidy that's all that matters.

Can someone remind me of the slow reduction plan please, I will then be ready when I feel better

Greetings everyone glad you are still there

[Rugger in reply to EdithWales]

Search on here for "Steroid Taper Web Application" and you'll find all manner of slow reduction plans. Sandra, who put it together, has PMR and is studying Computer Science.

[EdithWales in reply to Rugger]

Thank you. I will start tomorrow. You are so right about flares and I was very depressed and dispirited when it happened to me but I know now it was too soon. I haves read that below 6 which I am on there are minimal side efffects, I suspect I have had them all anyway.

Annwyl as we say in Wales

[PMRpro Ambassador in reply to EdithWales]

Or the non-tech version of mine is here:

healthunlocked.com/pmrgcauk...

[EdithWales in reply to PMRpro]

Thank you. Nice and slow does it

[Hindags]

Good luck with the job and the cleanse etc.. Wish your GCA/PMR journey weren't such a difficult one. Hoping that as you taper the Pred you'll be feeling better.

[Jackoh]

Hi Tj2017. So pleased to read that you are in a better place and all best wishes for the interview. I'm sure it must be so difficult to control eating at the moment with the level of pred you're on and with all that's going on. So much good advice given here re food and nutrition- thank you all. Like others here I don't recognise my face or body on photos. I'm probably about the same weight after sticking to a low carb diet but weight has been redistributed to an enormous bust ( or so it seems to me) and wider waist but as all say - don't look at the photos!! Let us know how you get on. Xx

[Rosedail]

I am sending good wishes from Colorado for your health and well being and for your job interview. I just looked at my medical records the other day and they document that I gained 15 pounds while on prednisone...about 12 of which I've lost now that I'm off the prednisone and eating decently well (Mediterranean diet but a bit heavier on protein and lower on the "starches"). As much as I hated my dependency on prednisone and how I looked at the time, now I look back on my moon face photos with a bit of...pride.

Perhaps "pride" is not the right word. I feel that I traveled through a difficult time in my life and then landed on the other side a bit more mature and a bit stronger and more accepting of my flaws. The photos of my moon face are a testament to that. My mother also had PMR and she too had the moon face decades before it was my turn...so seeing her moon face in the photos from at my brother's wedding remind me of how strong she was (and is). For what it's worth, my advice is to be good to yourself every single day, forgive your body, and treat it especially well. Clear out all unnecessary commitments so that you have time to care for yourself. I found it took more time to do the basic activities of daily living, but that in slowing down I really did appreciate the moments more. Have fun with the cleanse! I hope you get this job...but you will figure out a way even if you don't Best to you!

[Leilagirl]

Great advice about small meals .. healthy choices like you are doing.. What you are describing is rough. Being hungry is so real on these meds. I get so hungry at night And I know I have to take a pill so I have to have something in my tummy. I have decided to try plant-based protein easy to digest drink or smoothie. Vegan no soy..I will do this a couple times during the day when I get hungry it’s low calorie protein and filling and healthy. I just use a little coconut water but that’s high in calories so I’m very mindful of that otherwise water. Eating small nutritious food often is the key and every bite I have to be mindful of for sugar and carbs. I have managed to keep my weight the same as when I started but I’m on low-dose prednisone I can’t imagine being on high-dose I would be starving all the time I’m sure . Best of luck!