News, Update and Misc. info from USA

News, Update and Misc. info from USA

Greetings to all over the pond! I've had comments and new visit to the Rheumy, so thought I would pass on a bit of info altogether in one spot.

First, have really been dragging so far this Spring and Summer. Mostly over outdoor gardening chores. But I don't want to not do these things ! So, I know I have been pushing myself, the only Pacing I do is go lay down about 2-3 times a day, especially after feeding, watering and transplanting baby seedlings. The worst is getting the garden hose out to where I need it! Just too heavy and so difficult to pull through the yard with my 4-wheeled walker! Get that job done, and I crash on the bed, hurting so much I can't believe it.

Also have break-through spots of Psoriasis, despite taking MTX, Leflunomide and Biologic Simponi.

First thing my dear Rheumy asks is, "have you noticed more fatigue since we increased the leflunomide last time?" Uh, maybe? but the time coorelates with advance of Spring and outdoor chores.

He said Fatigue is a common side effect of leflunomide. Hmmm. Thought there may be many of you on lef. that might notice this too.

I have experience alot more pain than usual, especially getting out of bed! Yikes! Morning stiffness at its zenith! I can hardly get out to the kitchen, one foot at a time, leaning heavily on the walker. Glad nobody sees me at this hour!!

So, he asked if I'd like to try a regular daily dose of Prednisolone? I recall many of you taking it, so I agreed.

Took one last night, hoping to get out of bed easier this morning. I was wide awake till after 2am! Got up at 5:40 But I wasn't sleepy..then got out of bed, put glasses on, took hold of the walker and went out to the kitch. to make coffee. Then I realized I did that without being stiff and pain-ridden! Well, my goodness! I might like this. But, I do have to watch for increased water retention, increased appetite, and swelling of feet, ankles and fingers. We have to pay for plusses in life, don't we?

I do remember in the past, it has also increased ambition. Remember one time, laying awake till wee hours, thinking I could go paint the kitchen! I controlled that one, didn't do it!

My question to those on daily Pred....does this ambition reaction go away? How much time do I have to accomplish a few chores I have been intending to do, but had no energy to accomplish! Painting the kitchen is NOT on the list:)

I told him I just do not have the strength and energy I had last summer, doing all these things. He said, looks like I'm in a flare, Sed Rate 71!! Holy molly!

Then the inevitable comment, "of course, as you get older, these meds may not work as well because your body cells may not absorb as much as previously". Crap on that one too :)

This is getting long. I want to tell you all about some other things, so I will write again soon.

I have missed sending comments, more like I used to..just often very exhausted and hurting when I finally get to the computer, so I read yours and try to keep up, but I think I might have missed somethings. Did Sylvie and Bob return from Holiday yet? Did Allanah go with caraavan yet, or is she talking about it yet? Tilda..hope you are resolving things, just stay with the MTX! How did you get along during your concerts? Was it hard on your feet to stand that long, or did you have some extra cushiony shoes?

Got a new Mr. Coffee Coffee maker yesterday, metallic Turqoise color, to match other items of decor in my kitchen. Anyways, thought of the gal who used to work at ...omg, a senior moment, can't think of the name of highly popular coffee shop! Their coffe is stronger, so always a treat. Anyways, set the new coffee maker for "Strong" so I'm going to go have another cuppa :) Cheers to all! I'll be back! Maybe Prednisolone makes me even more verbal :) Loretxxx

15 Replies

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  • Good to hear from your Loret as you say it's been a long time. I am on Lef but have put down fatigue as part of this disease that we have. I am currently taking Vitamin D due to the tiredness apparently had zilch in my body of Vit D. That skin of ours will not disappear will it, although mine has lesson to almost nothing now with all that they are flinging at me for the PsA.

    Those flowers look gorgeous are they from your garden and one of the ones that your grew from seed? I hope the coffee machine lived up to expectations and you enjoyed your coffee. Hope to hear from you again soon. xxx

  • Yes lovely loretta we did get back last saturday and a lovely time we had too. I know your still about as i have seen you on f/book.

    I am on steroids and now i have started cimzia,so heres hoping things pick up for me. Steroids do give you a boost,but they really do put the weight on as i well know.

    Glad your back blogging on here loretta you have been missed.xxxx

  • Thanks Sweet Sylvie :) I know, the weight part scares me. I had lost 33 pounds since last June, managed to keep it steady through the Winter and up to now, but Prednisone scares me. Also being mild diabetic, I have to watch that too. Waited till 11:00 to have breakfast, had a scrmbled egg on English Muffin. Then Salad at 12:00, so far, so good. Will have to give away two kinds of Pasta Salad, no mayo, but the pasta is a killer for weight watching. I made some Satrday and a friend did too, we traded each other, and I still had some of mine still left. Maybe neighbor across the street might like some.

    So glad to know you have started Cimzia! Just terrible you had to wait so long! I asked doc about a Depomedrol inj, but he said the prednisone tablets, 5mg daily, will work much better. I sure noticed the difference this morning!!

    Now, Sylvie, don't go over doing anything when you begin to notice more energy, etc. It will just set the healing back more, ya know? Believe me, I do know the temptation!! Especially when you think there are gardening chores that just can't wait! :)

    Did you see my wet -haired, wind-blown, disheveled self, picture of me on Tim's boat Sunday? Daughter-in-law took the picture and sent to Facebook on Monday. I can't wait to go again!!

    Be good, girl! Love ya, Loret xxx

  • Hi Georje, Good to hear from you too! The flowers are tulips, taken two years ago.. I planted the bulbs in the Fall of 2005. I'm thinking they probably need divided now. Another Fall project.

    The new lesions are on, of all places, my shins! And they itch. So i'm rubbing in Rx Betamethasone cream morning and bedtime. I think maybe now with the Prred., they will volunteer to go away. Just a tiny reminder of how it was! I had huge areas of flaming red, silver scales, all over my torso, elbows and legs, and scalp! But once I got on MTX it began to fade away. Now there is usually no sign of it, but doc yesterday said I was obviouly in a flare, and so the Prednisone will knock that out too.

    I already feel more energetic today, however, the humidity is 93%, when it isn't raining. We are almost at a record-breaking amount of rain in the month of June. Previous amount record was set in 1923, at 9.??inches. So energy level up, humidity is a killer, along with temp in mid 80's. Not getting much done, but a little weeding around my babies. Sorry, don't have a conversion chart, but reckon Google does :)

    Now it's nap time since I didn't sleep much last night, and want to stay up to see some new suspense thriller program coming on the tele tonight at 10:00

    Take care, stay cool :) Loret xxx

  • Scouser!! Oh gosh it has been a long while chatting with you! Well, I've written replies to Georje and Sylvia, so can't add much more, but I will make an effort to stay in closer touch. I think the pain-free goal is always there, sometimes it better enough I can sit down and start typing ad infinitum!..

    I hope things are doing OK for you. Will be intouch, PM me if you want. :) Loret xxx

  • Hi Loret - great to read a blog from you. No mention of your lovely Frenchman though - I do hope everything is still going well with him? The weather you are having sounds like my idea of hell I'm afraid - the lovely cool, evening sunshine here has already given me a red face and that was after only about ten minutes working in the garden!

    You do know you should take Prednisolone in the morning don't you - all tablets together? I guess you took it at night to get started but it will keep you awake if you take it late like that. It makes me go really nuts but it works too so I guess it's another drug with mixed blessings for me. I've reduced to 12.5 injectable MTX and I'm not flaring yet - it's been 2 weeks now and before that a month of 15mg. I found the horrible taste it was giving me too bad to just keep going with. But on 12.5 I've no bad taste and only a bit of nausea so it's fine. Hope it holds the RA at bay. My RA doesn't feel very active anymore but I am getting an increase in stiffness again - especially after sitting down or when I wake in the morning. It could be OA though.

    The concert went pretty brilliantly and my feet held out although I could hardly get off the platform at the end - but that wasn't too terrible because everyone else was stirring or walking out by then so I managed with no stick. Here's a link to the choir site that I organised myself for your interest - ,mayfieldsingers.com. There will soon be a recording on the Songbook section apparently but it's got to be processed first so don't hold your breath!

    I do hope the Pred kicks in fast for you and you feel better but please don't over do it and end up with even more damage to your joints as a result. Put ambition into all things mental rather than physical if you possibly can. XXxx

  • Woops I wrote that wrong! - mayfieldsingers.com

  • Ah, thanks for doing that! I will go visit as soon as I get done here.

    Oh..my Rx reads take one tablet daily. I took it last night thinking if it really makes a differencein the morning, and I can actually walk standing straight up..well it did, but you are right, I was awake till very late.

    So I will take them in the morning, just one 5mg tablet daily. So far, not too bad. Looks like it is working on my brain..in the vocabulary center :) cheers, till later Loret xx

  • Frenchman stranded in London. I talk to him atleast once a week. He really is desperate to leave London! Sylvie asked also, in a PM. I answered her, can't write all of it again, but maybe she can forward it to you. Later :)

  • I found out the hard way because I took 20mg - I think it was four 5mg tablets a day and I spread them out like with NSAIDs. Then I was up all night and my RA flared the next day in the weirdest way - two fingers went heavily pregnant at the PIP joints. My GP friend was staying and she laughed her head off at my fingers and said it was proof, if any were needed, that this disease is fairly bonkers. She told me to take them all at breakfast and they would work more efficiently and I'd sleep more easily and she was right.

    Poor you flaring with ESR 70+. I always assumed RA/ PSA would sort of burn itself out if you've had it a long time but evidently not.xxx

  • Beautiful!!! Very nicely blended voices ! Congratulations

  • Don't worry I don't need the details Loret I just wanted to check you are still together as he sounds nice. Tilda xx

  • Yes, we are, and he is :)

  • Lovely to hear from you! Tho' a shame Monsieur X is stuck in London, I thought he was the way back months ago. I've not taken pred long term, but tho' it changed the shape of my face (a bit moon faced, but did plump out the wrinkles which wasn't so bad) I was careful about diet and didn't put on much weight. But don't overdo it in the enthusiasm - no weight lifting as well as kitchen painting. Which reminds me...do you have a lightweight fabric hose already? As if not, then you should! This is link to UK site, but must have same in US

    amazon.co.uk/Flat-Hose-Spra...

    Stay in touch....Polly

  • Yes, we have that , called the Pocket Hose, I need to get one, soon as I can get to Walmart or CVS here. I have had my eye on that thing ever since I first saw the advertisement! Might even get one this weekend.

    Right now, we have had blistering heat, high humidity and thunderstorms every late afternoon and evening for 7 days straight! So I have some time before I will need one:)

    Re; Prednisone. It does scare me. I watch my weight every day. It being hot summer doesn't help, as I will tend to drink iced tea throughout the day, and know I have to curtail that as it will accumulate with Prednisome. Plus being mild diabetic, it also causes the blood sugars to rise, so must avoid pasta, potatoes and rice as much as at all possible. Actually, that is my daily routine anyways, but I don't want Prednisone to mess up the 30 lbs I lost since last June.

    Yes, Monsieur was at the airport to return home the Thurs before Easter, when the agent told him there was a block on his passport, he couldn't leave until he paid the UK gents 840lbs sterling, for having over stayed his work Visa, evn though it wasdue to having to wait until Feb to receive a new piece of equipment to replace one that was damaged in a very bad storm in December. Apparantly, due to cost, they only make them upon order and downpayment. The wind tore his canopy and one of the tarps he had over 8 units, costing $5400 each, so it stripped him financially to replace it! He is in the distraught, devastated state of mind right now. He is petitioning some clients he did work for back last summer just before leaving for London, to pay him what they owe, so hopefully soon! I try to tease him about apparantly falling in love with London and hates to leave, but he didn't find that amusing :)

    I do believe I am living a romance novel, should write this stuff down! Take good care, Loret

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