Early morning struggles

[cathie]

I'm nearly at week 12 on Enbrel. I can feel some improvement although coming off pred its hard to be completely clear about things as my body adjusts. However I have noticed how dreadful I feel first thing, and then after a shower, getting dressed, I tend to feel a bit more human. I know this early morning thing is typical of RD, but I've never experienced it quite as acutely.

[earthwitch]

You have PsA, right? The early morning thing is really typical of PsA and AS - and if you can keep yourself moving, then you free up really quickly. Do you do daily stretches? If not, check out the exercise programme on the NASS website (even has a free app) and do what you can to unstiffen each morning. The exercises are great for increasing energy during the day too.

Also, remember that the effect of anti-tnfs can keep on getting better for six months in some cases. Good luck with getting of the pred.

[cathie in reply to earthwitch]

I have just ra plus bad oA in my knees. I'm probably going to have knee op. But I'll check out the stretches. Thanks

[Susiej38 in reply to cathie]

Hi Cathie- I was thinking of you today and hadn't seen you on here for awhile. We had both started Enbrel at the same time, but I was taken off of it after 2 injections due to bronchitis . I was and am also tapering Pred and seemed to be doing pretty well with the Pred taper until today. This is my 5th day at 2mg going down from 2.5 which I was on for over a month and did fairly well. Now unexpectedly I am having RD pain in hands and elbows. Are you also on MTX with the Enbrel? That is what my Rheumy intends for me to do. I am hoping to get cleared to restart Enbrel this coming week. I am very interested in how you think it is helping or not helping. Good to see you on here again!

[donnalouisec in reply to cathie]

I cathie, I an having trouble with my knees at the minute but it doesn't feel the same as my RA did. Now they hurt when I stand and I certainly can't kneel, but when I bend my knee it crackles really bad. I've googled it and it suggests OA Just wondered if yours are the same? X

[cathie in reply to donnalouisec]

Yes that's what my knees are doing. Getting up from standing is hard. Sitting I dont feel much but they're murder at night. I'm going to see a knee surgeon next week as an X-ray back in Jan said I had severed osteo. my sister had a partial knee replacement and she is much more mobile 10 weeks on. I'm very apprehensive, but I dont think I can go on with this.

After 11 weeks on Enbrel I do feel some improvement and am coming off steroids. So some progress, but that will have to go off Enbrel if I'm having an op

[donnalouisec in reply to cathie]

Does your knee crunch all the time? Mine even hurt trying to walk up steps I'm going to mention it. I had neck surgery in May and I was very anxious however they were really good. I'm now on tozilliumabab after failing on all the others and had to stop for 8 weeks. I think the pain from my neck made me forget however I welcomed having it again a few weeks ago. Try not to worry too much xx

[cathie in reply to donnalouisec]

Yes it does crunch but it also makes another more sinister noise which I can't categorise. Have you had an X-ray on your knees? Would be good to know what's happening.

Thanks for the reassurance.

Cathie X

[sylvi]

Big hugs from me Cathie. I can't get off the steroids because as soon as i come of them i am back in pain. I have increased them from 5mg to 10mg at the moment due to being in so much pain. The humidity has crippled me. xxxx

[cathie in reply to sylvi]

Oh Sylvie, nice to hear from you. I've been trying to live through the steroid coming off pain and am down to 3. I'm hoping that the pain from that withdrawal will go eventually. But the effect on diabetes has been chronic, so they have to go!

Sorry about the humidity. Its much cooler here in Scotland. Hard to believe its so hot so near!

[angel-delight]

Hello, I have been on Enbrel but was taken off it due to having a rash which they don't know what the cause is. I see a dermatologist in 2 weeks and hopefully it isn't any of the medications and I will be able to go back to taking the Enbrel again. I did think that the Enbrel wasn't working as well after having to come off it once before for about 6 weeks. This time it has been about 12 weeks and I now can tell that I was working and eager to start the injections again. I am also taking pred for a couple of months whilst off the Enbrel as I am in the middle of moving home (retiring due to RD ) and without it I wouldn't be able to pack etc. I also had bad pain and stiffness first thing in the morning. I am interested in what the exercises are so I will check that out. Thank you for the information, I hope the Enbrel works for you as I was also on mtx 6 tabs, and pain free, but the side effects were really bad I had to stop taking it. I wish you well, RD is such a terrible disease to have to deal with. Take care. S x

[Hidden]

I know exactly how you feel cathie!

I too am feeling shocking first thing. It must be my RD but have to obvious swelling. I have to walk to the loo on my heels because my toes feel broken. And my neck is very stiff this morning. I have stiff hands and 3 trigger fingers. I am only 5 weeks post Rituximab so a way to go before it kicks in.

Could you leave reducing pred until the Envrel has taken full effect?

Take care. My fingers are crossed for you. Hope you get more relieve pdq as my mum says! Pretty dam quick

[Jora]

Good morning. I'm on week 2 of Embrel. Last week I lost 3 days; I was completely wiped out, this week(yesterday), I spent most of the day asleep . Too soon to say how I will fare today and the heat doesn't help. My head feels as if it's full of cement. Joint-wise, like you, I can't tell how much Prednisilone is contributing to the improvement. I'm down to 10 mg. last time, I got as low as 3mg, before bad pain set in. So, we shall see.

Good luck

[cathie in reply to Jora]

I was very tired immediately after my embrel jabs, for a couple of days. I hope you can get some relief from the heat.

[cathie]

Thanks guys we're all struggling by the sound of it. I'm in a hurry to get off pred cos it's badly affected my blood sugar levels and diabetes people were threatening to put me on insulin. I'm down to 3 pred daily, heading for 2 next week.

Some mornings are better than others, the enbrel seems to have taken up the load from the pred. My main problem most of the time is the oa in my knees.

It's cooler today here in Scotland, but I hope you guys in the hot south get a bit of relief

[Footdoc]

Hi Cathie

I've been on Enbrel for four years now. It took a while to make a difference, especially in the mornings. My mornings are not good, but when I read your post it made me think about how much better my mornings are to what they were. So yes, there may well come a time when you may notice a change for the better. But I suspect that with most forms of RD the mornings are rubbish, the difference is better than what I had for about three years prior to starting on Enbrel. So big hugs, hang on in there and bide your time. Let's face we all become very good at that.

Footdoc

[cathie]

Thanks for encouraging words. I'm trying to remember what I was like when I was on onfluximab at first. I think the changes are quite subtle. And for me,bad oa in knees is holding me back. C

[shareasmile]

Cathie,

I have been thinking of you lately and wondering how Enbrel is working for you. You give me encouragement. I have had 3 Humira jabs now and am still waiting for relief. I am actually feeling worse than when I started. I am trying to avoid prednisone. It provides a lot of relief but I want to be able to feel if Humira is working without masking the pain with prednisone. Is that twisted thinking? I am getting very frustrated with it all. I had high hopes that Humira would be quick relief, but need to have patience as you have had. I guess I need a good pep talk. All the best to you. I hope you find relief from your knee pain soon.

[cathie]

I'm not doing brilliantly either, - so sorry that your Humira isn't giving you instant feedback. My explanation is that I'm coming off steroids and that isn't easy. Down to 3 but I wake up feeling ghastly. This afternoon we went to the physio who gave my knee a wonderful massage and started to get the circulation going there against the inflammation.

I think you're right to avoid pred. certainly not good to be on for more than a couple of weeks. Coming off it can be tricky can't it. When I started enbrel I was on 10 pred now Im down quite a lot, but I had to keep reducing because it was causing my blood sugar levels to rise too much. I've an appointment with the knee surgeon on Friday and am increasingly resigned to an operation. Cant carry on like this much longer!

I dont know what to say for a pep talk. Are you keeping a diary? I find its quite useful to look back on how I am during the week especially I find the days immediately after the injection I'm very tired and inflamed. Big effort to get up and function - though I do find a shower helps to get going. Its not too hot here in Scotland, but I suspect great humid heat wouldn't be great.

Keep going - how long do they say Humira takes to work? Enbrel is supposed to show something by week 12, and I think it has taken up some of the load left by tapering Pred.

CX

[Jora]

I am less experienced than you with Enbrel, but you have my sympathy. I can tell I'm in flare, but not sure if this is a reaction to Enbrel, despite Enbrel, or less than it would have been without Enbrel . I'm getting pain in places I didn't have it before. Heigh,Ho! Jo

[cathie]

It is hard and I dont have that much experience! I've got worse morning stiffness than before. I did have ten years on infliximab + methotrexate and i did quite well on that. Had to come off because of liver problems, but I am wondering wether enbrel + something might work better.

[Jora]

I posted somewhere else, but now can't find it, a tip I read for tapering Prednisilone, especially at lower doses. I'm definitely going to try it . It goes something like this: 3, 3, 3, 3, 3, 2.5, 3, 3, 3, 3, 2.5, 3, 3, 3, 2.5, 3, 3, 2.5, 3, 2.5, 2.5. Etc. Apparently, this allows one's own adrenal glands to gradually wake up forgive me if I'm teaching you to suck eggs. Jo

[cathie]

That's good and helpful and about the only way I can imagine doing it. My only question is about getting pills that are .5. I'll consult pharmacy. Hope you sleep well

[nomoreheels in reply to cathie]

If it's any help cathie the way I taper off 3mg deflazacort as explained by my Rheumy is this:

reduce 3mg on alternate days for a month, then half a tablet (quarter of 6mg) on alternate days for a month & half a tablet (quarter of 6mg) on every third day for a month and stop. It's worked in the past for me when only on 3mg for one month then stating to taper, although I must say I couldn't manage it after taking it for 6 months & had to go back on 3mg. I see my Rheumy on Friday & will have to face that again problem again I would think as I don't believe it's the best thing to be on them long term but hope she can offer another way of coming off it after another 4 months of 3mg daily.