Good morning, I wanted to ask..... should I see a miracle at that week 12 magic number, or should I prepare myself not to feel any better? I’m awful low....been diligent in taking these meds, methotrexate, sulphasalzine, and hydroxy......pain management is shots in the butt with steroids to tide me over, but they aren’t really tiding me over? I’m in lots of pain probably week two of each of the steroid injection, and I’m due one more this Friday that is to take me up to the magic number of 12 weeks. I have been told they can put it directly into my shoulders which would be targeting the steroid to where I need it? I guess I’m just anxious, I wanted to be steroid free, but I just can’t live with this pain....and then I’m anxious that the DMARDs aren’t actually working? I thought I would have felt some change by week 8? It would be nice to hear your thoughts.
Week 8 of triple therapy: Good morning, I wanted to ask... - NRAS
Week 8 of triple therapy
Dear Piglet,
I’m really sorry you have been suffering like this and the triple therapy really should start to work soon. But I found that steroid injections into each shoulder made a huge difference to me when I was in a similar situation to you and struggling to lift my arms to wash, dress and brush my hair. I was so desperate to continue to live independently I would have tried anything my consultant suggested!
The fact that you have been started on triple therapy probably means your disease is very aggressive. I think in your situation I would have the injections to get some relief soonest but it’s your decision of course.
Thank you Lola.....yes I’ve been told it is aggressive, and this concerns me.....my rheumy tells me he will get me back to my old self...... and I really struggle to believe this right now, I honestly thought I’d have some relief from 7 weeks of triple, but I keep being told it’s too soon. Thank you again
Talk to your rheumy...if he thinks you should stick with the triple therapy ...listen up.
12 weeks is bandied about but if you can bear to hang on to say 20 weeks you might be surprised.
I know it seems a hell of a long time but it’s a lot better than spending the next years chopping and changing Dmards and remaining on Pred.
20 ...... 😮 but I Get it.... it’s time that makes all the difference..... I know it’s here forever and I just need to find something that works and gives me some respite from it all...... thank you....I’m listening up..... 😊
Look at it this way .....you are of course unfortunate to have been diagnosed.....but on other hand you are fortunate not to have been diagnosed 20/30 years ago.
People diagnosed back then had very little choice of drugs & the drugs that were available were often very harsh, and most patients were fed prednisolone, and some are still on it, with all the attendant disadvantages.
Your rheumatologist isn’t withholding drugs from you....he can’t go any faster.....the same drug on a different person takes a different length of time to work.
So just try to be patient.....because only time will tell when you have found “your” drug.
Hi pigley
Sorry you're struggling. Fingers crossed for you the meds kick in. It's very possible the drugs will kick in.
But with these drugs there are no guarantees as the docs don't know which drugs work on who. We're all different.
Good news is if you have RA there are loads of drugs now.
Try keep hopeful I know it's hard when you're in pain. And look at other ways to support your disease too.
Healthy diet, exercise, using ice and heat, mindfulness, Epsom salt baths and anything that is going to help you sleep.
Really hope you get a break very soon.
Take care
Kiki
Ahh Kiki thanks.... yes it’s a gamble and I need to prepare for the case of them not working and being put on something else..... it’s just the waiting?..... I’m now taking normal pain relief too alternating cocodamol and ibobrufen but it’s pretty non effective too..... I’m certainly looking forward to the shoulder injections..... just hate all this medicine in my body..... I’ve got a pretty good diet and exercise.....I use mindfulness a lot.... I try to quieten my mind..... now the Epsom salts is something new and also good advice and I’ll try. Thanks
Epsom salts contain magnesium which is great for pain and sleep.
I use 2 cups Epsom salts
I tablespoon soda bicarb
Few drops of essential oil
Drink water before you get in as you can get dehydrated.
Your body will take in the magnesium you need.
Supposed to do it daily but I really struggle to get out of the bath so I take magnesium citrate at bedtime to bowel tolerance.
That's a whopping 6g for me, I must be very deficient.
I’m going to give the bath time regime a go. Thank you
Hiya Piglet, I'm sorry you're in so much pain. Unfortunately at times we're reminded that Rheumatology isn't an exact science, because it affects us all differently, as does our response to meds. This plus none of them are fast acting & why the approximation of 12 weeks is given. Some respond quickly & others not so. But you're only at week 8, I say only, they will have been working, just you don't feel they have. I'd hazard a guess if you think back you were actually worse before you started your triple therapy, it's that pain that wears you down & makes you less resilient. Trust me, most of us have been just where you are but things will get better, it takes time.
Then there's how quickly after first symptoms you're diagnosed with RD, which is where severity comes in, how hard the meds have to work & if the appropriate dose/s have been given initially, they may need some tweaking. So, as you see, it all depends, which I know isn't helpful when you're in pain & dealing with inflamed joints. This is why steroids are often given (injection or taken (oral) to help reduce inflammation & the pain until the meds reach their full potential.
There is the possibility a general steroid injection doesn’t last long (I don't respond to Depo-Medrone generals but I do to the targeted injections which have been Kenalog). The trouble is we can’t rely on steroids, they don’t treat the disease & we're limited as to how many injections we can have as they come with unwanted problems. It may be that an NSAID or pain relief will be prescribed if it's thought necessary, again, to help with the inflammation & pain, or oral steroids may be needed. I'm on low dose long term as part of my treatment but it could be you'll be prescribed tablets at a higher dose until you can be brought under better control.
I know it all seems so hard just now, early days it is, we understand how you feel. When are you due to see your Rheumy again?
What a great reply..... and really understanding of where I am right now. I have thought about how absolutely debilitated I felt in April..... no movement in my upper body and I do think you’re correct in that I’m possibly slightly better than way back then.... I agree the butt jag has not really helped me, oral steroids did but of course I was weaned off them and I’ve gone downhill since then. I just wish they’d stuck the Last two injections into my shoulders as my physio too said that targeted in the shoulder will be better?.... anyway I speak to her Wednesday as I had hop d not to have the injection in Friday but she said let’s keep Friday appointment and talk Wednesday and if you want the injection we will target it to the shoulders on Friday. The pain gets me down hugely, not being able to lie in bed and sleep soundly is awful. Thank you 🙏😊
You're welcome. I'm pleased it was helpful. The steroids can be wonderful but really only when absolutely necessary, to give quick if not immediate relief. I meant to say, I've had steroid injections in my shoulder, my Dad did too, an old goalie injury. They're the ones I've responded to best, targeted injections, pretty much immediate relief so I hope you experience the same. Relief anywhere is welcomed particularly when you've widespread pain I know. You're basically experiencing a flare, when the disease isn't well controlled, it's just that you're waiting for the meds to work rather than responding less positively to meds us oldies have been on some time, or the condition worsening through poor management. It can happen but thankfully not often.
Given time other meds can be prescribed if you have issues in particular areas such as muscular but they probably won't be offered until it's known how your respond to the DMARDs & you're brought under control. If specific areas continue to be problematic they will be addressed, don't worry.
Hi Piglet, I’m sorry to hear how much you are struggling and I do hope that the triple therapy starts to work soon for you.
I do hope that the steroid injections into your shoulders brings a little more relief for you.
The waiting is so hard when we are starting on new treatments and it varies so much for each other us.
Really hope you get some more relief really soon and your DMARDs start working for you. x
Honestly? It’s brutal finding what works and what doesn’t. I’m sorry to say that.
If you’re feeling little relief when you go back to the Rheumy, see if you can push for biologics. They’re a game changer. There is a benchmark for them, but you may be able to push it over the edge particularly if you have the rheumatologist on side if it’s borderline.
It took 18 months before I found significant relief and I had to rely on steroids. I was lucky in that the first biologic worked and I could stop the steroids and chuck the compression gloves and aids away.
It’s a long game I’m afraid. But, there will be a light at the end of the tunnel.
18 months is a long time to feel pain and it’s lifting to hear you are in a good place. I’m getting no relief right now and I’m low....3 cocodamol and 3 ibobrufen do ziltch.... steroid in the butt does very little.... and I’m hoping shoulder injections this Friday gives me the relief I need right now. It’s hard to believe I’ll be “me” ever again? 😒
When on Hydroxychloroquine, I started to get some good relief nearer 16 weeks and the full effect about 6 months. MTX was somewhere between 3 and 4 months and I couldn’t tolerate sulphasalazine. I think that, like all RA drugs, you need to give it 6 months to be able to say it’s not working as the effects are cumulative. By 12 weeks you may well start to get sight improvement but each week after that should get better. Hang in there!
Thank you..... it’s good to talk to you all....you’ve all experienced the wait..... did you have lots of steroids to get you through?
Absolutely! I reached the limit of what they could give me at one point and just sat crying in the doctors room at the thought of not getting more. At that point I didn’t care about the potential risks of more steroids, just the unending pain and lack of sleep. My physio helped a lot with deep massage in my shoulders. It was agony and we would both be in tears (her because she couldn’t bear inflicting the pain) but it did give me some relief for a few days after she finished each week. The first year after diagnosis is horrible but there really is light at the end of the tunnel. I’m now on MTX and Rituximab and really don’t feel too bad most days and can do most things if I pace myself. Good luck 💕
You have been on the journey and know exactly what I’m experiencing. It comes down my arms and the pain is crunching and gnarling..... I’m tired and low..... ive lost all interest in life..... I can’t think of anything other than wanting to feel better, it’s not a good place..... I’m on annual leave right now and what a waste..... thank you 🙏
I have been there and you will get here too 💕 Don’t fight it, rest as much as you can, get decent pain killers from your GP. I also found using a thermal throw helped. Heat always helps me so cocooning inside the heated throw would often relax me enough to let me sleep for a few hours. I tried a warm bath but could get back out 🙄 and I cried buckets. It does get better x
I’m glad you are better..... and I’m hoping you can get out the bath now 😃..... what pain killers worked for you?
At one point I took cocodamol 2 tablets 4 times a day of the maximum strength variety and then 2 tramadol at night to help me sleep. I can’t take anti-inflammatories like ibuprofen as I have a stomach problem. Now I take 2 paracetamol on occasion if it hurts. And yes! I can get in and out the bath😁😂
It is hard to be patient when you are in pain and yes 3 months seems like an awfully long time. They should start to work soon but in the meantime I would get the injections in your shoulders. I have been in your position and life is very difficult with painful shoulders. I have had the injections directly into most of my joints. The ones in my shoulders did work very well for me. I hope you get them soon. x
Some great advice Piglet 007 from everyone. I just want to reassure you that when I had injections directly into the affected areas it was a great relief. I hope the triple therapy works for you. I had a bumpy ride at first but getting a biological treatment was the game changer for me. It's early days but you will get there and if it's not the triple therapy there are always biologic treatments to try. Good luck.
So sorry you're suffering like this. The weeks of waiting for the meds to work seem more like years. It's terribly hard to carry on believing you will get better, but you will, maybe not 100% back to what you were before, but almost certainly most of the way. A low dose of oral steroids got me through those months. They also lift your mood. It takes ages to taper off them, but it's not impossible.
It's pretty common to feel despair around this stage, but concentrate on getting the pain under control with whatever they can give you. The shoulder injection might be the thing that lifts you to a better level. Best wishes.
Thank you bacharia, everything you say lifts me, I know I need to be patient and look forward to this time coming..... 😊
Postponed appointment!
first orthotics 
Biologics 
RA and methotrexate, work and benefits
RA progression
