TAPERING, DEPRESSION OR BOTH?

[Missus835]

Hi all. I've been mostly stuck in my flat for the better part of 7 months due to, severe osteoporosis, 9 vertebral fractures and the need to "baby my back" (Osteo Specialist's words, not mine). A lot of pain. In November went to GP with possible flare. She put me back up to 20 mg. Pred. A few weeks ago had follow-up phone consult with Rheumy, who cannot be reached - ever. She immediately put me on a drop from 20 to 15 mg. and then 2.5 per week until I reach 10. She was quite angry. I, of course, did not comply. Have now reached 13.5 down from 14 (which I was at for two weeks). Again waking with headaches from occipital muscles, daily. These stopped at 20 mg. My anxiety levels are over the top even with my anxiety meds. The anxiety starts ramping up mid-afternoon. I take my Pred at bedtime and wondering if it's the effect of timing of the Pred starting to leave my system? I've had anxiety and anxiety disorder, but not to the extent where I'm calling my daughter to talk for 3 hours. Actual panic attacks. She talks me down. Mull over everything. I am trembly and weak feeling. Stomach flips and flops. Cry easily. Appetite gone. Thinking depression has perhaps set it, but is it partially caused from the taper? I go to GP tomorrow and pretty sure she will recommend a SSRI. If this is from the taper, I don't want to get stuck on an anti-depressant, but at this point, it may actually help. Thanks folks.

[Merryfield]

Dear, dear Missus. My heart goes out to you from Southern Cali. And it’s cold to boot up there I am sure. Shame on that rheumy for shaming you into not taking the pred you need and urging you to reduce way to fast. I say fie on him or her. You don’t want to take more meds. I get it —If this testimony helps—have been on anti-depressants since ‘91. I have some age-related memory loss but organs are good. I know what it is to have a cloud over one’s head. Cannot imagine being cooped up for so long. Open the door, get a blast of cold air and close it again? There is a light at the end of the tunnel.

[Missus835 in reply to Merryfield]

Hi Merryfield. We have approx. 75 to 100 cm. of snow over the weekend. Brrr. I only just recently felt like I could have depression. Really since I began this taper. I have had generalized anxiety (GAD) all my life but they make it extremely stressful and difficult to get a benzodiazapene up here in Canada, even if it's helping and actually relaxes the back muscles. Go figure. GP will not prescribe even though I've been taking for at least 15 years. Fresh air always feels so good. Thanks for touching base.

[christi48 in reply to Missus835]

I can relate to your anxiety. I am inclined to it anyway, but when I start a new (slow) taper, it ramps up - heart pounds, scared of what might happen, "awfulizing." ad nauseum. My doctor gave me some propanolol to take as needed and it helped a lot. Good luck to you.

[Missus835 in reply to christi48]

Same. I take metropolol daily. A beta blocker, for racing heart. I also have/had high blood pressure which may get better as I continue to taper. Anxiety....grrr. i get it. All the best to you Christi.

[christi48 in reply to Missus835]

Thank you💟

[Sharitone]

Sorry you're feeling so dreadful. I would think that if your doctor helps you any help at all with your depression, this would be a good time to grab it with both hands.

Any chance of getting more company sometimes?🌸❤️🌺

[Missus835 in reply to Sharitone]

Hi. Yes my neighbour drops in when she can, but she does work. Others keep in touch on FB. My daughter does groceries and drives me to appointments, which are quite a few. Living on the ground floor would certainly help, but I'm on the second. Small 4-unit building. You're right about any help the doctor will provide. It's not that I feel dreadful, just think things have piled up. Thanks ever so much for replying. xx

[Freshairfiend]

I really feel for you. I had a month of feeling really really low in my second month on steroids, when my gp reduced them too much in my opinion. I’m now back up to the initial dose and feel much better. So the feeling depressed may partly be to do with the sharp drop in doses you’ve been though, as others have said. If you can bare it, it may be useful to get your steroid dose sorted out and then go on an SSRI if you still feel too overwhelmed with anxiety and low mood.

Your situation is very conducive to depression, in that you’ve not been out for months and you’ve been in a lot of pain. Enough for anyone. Now you might feel caught between the GP and the rheumy, so you may feel trapped emotionally. The panic attacks are an understandable response to what you’re going through.

You could try ringing the PMRGCA helpline. It’s in the UK, but when needs must…The number is 0300 111 5090 and the line is open from 9am to 5pm Monday to Friday. 0300 numbers may be lower charge. It is run by volunteers who have PMR and/or GCA., so talking to other people may help you feel more supported.

Lastly, the steroids themselves maybe contributing to your low mood/anxiety; I’ve just read a really useful article in the winter 2023 PMRGCAUK magazine on ‘Mood and sleep disturbance on long term steroids’. She explained how and why steroids can make it hard to regulate mood and feel motivated. and suggested ways to help counter that effect. Here is the link:

pmrgca.my.salesforce.com/sf...

You can get the magazines emailed to you if you haven’t already joined PMRGCAUK.

In due course, it may be worthwhile to find another rheumy who suits you better. That may not be possible due to the way the system works, but I wanted to suggest it.

All the best.

Ps I am a retired psychotherapist.

[PMRpro Ambassador in reply to Freshairfiend]

"0300 numbers may be lower charge"

not from abroad though you should be able to use them. You couldn't call 0800 numbers from abroad in the past though.

[Missus835 in reply to Freshairfiend]

Thank you so much for this information. A lot of "meat" here. As I see the GP this aft, I'll show her this. She's very intimidated by the rheumy, who wrote her a nasty email. I would have traded off this rheumy after the first visit, but in Halifax the funded ones are few and far between. At that time I had no GP either. I didn't realize there was a PMRGCAuk mag. Just so I'm clear, are you saying hold off on the SSRI for a bit? After I reach 10 mg. they want me to drop 1 mg. per month, which is more reasonable. I can't immediately stop the .5 clonazepam cold turkey, so don't know if one takes both while weaning off the benzo. Just wanting to be prepared for this visit. Thanks again ever so much. Our forum is a treasure trove of knowledge.

[Hunter134 in reply to Missus835]

I was on Xanax for years and my dr wanted to switch me to another med.So not to get withdrawal symptoms he prescribed another from the same family.I think I ve had panic attacks since I was a child.I do hope you get it sorted out!!!

[Missus835 in reply to Hunter134]

Me too...since 6 years old. Been on some form of anti-depressant since 14. She wants me on a SSNI which also addresses pain and will give me a chance to very slowly taper off the benzo. Funny she knows you must taper slowly with the benzo, but not about the Pred and the rheumy, so I was told, has threatened to cut off my Pred, if I don't follow her tapering plan. Another cause of ruddy anxiety.

[Freshairfiend]

hi

I think the advice from other more experienced PMR diagnosed people was that you may have reduced too quickly. I’ve only been on this journey for three months. Your symptoms seemed to improve when you went back up to 20mg. You may want to ask Dorset lady or PMRPro, as they usually advise going back up to the next highest dose when you were comfortable and then staying there until you/your doctor think your system has re stabilised before reducing, but more gradually this time. Have a look at the pinned posts/ FAQs for more detail. My suggestion about staying off the SSRIs, if you can cope with that, was so you can see whether increasing the steroids helps or not. It helped me, but as the article points out, the steroids may amplify your mood swings. My gp would probably take a blood test at this point to check your inflammatory markers were ok, then you can be fairly confident of reducing.

Hope that’s clear and hope you get more support through joining PMRGCA, if you haven’t already done so.

All the best.

[DorsetLady PMRGCAuk volunteer in reply to Freshairfiend]

We have both conversed with Missus835 since she has been on forum, but unfortunately she has complex medical issues, and is not receiving the assistance she should expect from her medical team…

Plus as you are aware, different countries have different protocols … and it seems that in some specialisms some countries struggle even more than UK. Canada being one of them.

[Missus835 in reply to DorsetLady]

Right on DL. Hoping to get a few things sorted with GP this aft. Thanks for all the help and wisdom you've provided thus far.🌹

[Missus835 in reply to Freshairfiend]

Rheumy has threatened to cut off my Pred if I don't follow her tapering plan. GP could not be convinced that the Pred was causing the anxiety....even when I reminded her that when she put me up to 20 mg. for the flare in November, it was for a month...not a week. GP wants me on a SSNI which also addresses pain.

[Flutterbies57]

I can’t be of much help , but in my pred beginning I was put on 20 mgs . My Dr and Chemist ( in the same building) did not appear to know much about PMR , and had discussed between them where to go next. They both decided to put me down to 15 mgs next . It didn’t work for me ! They had another patient as well and it didn’t work for them either , so they decided together that it was far too big a drop , too soon. ( learn as you go ).

I was on the SSRI long before PMR due to Fibromyalgia and Ehlers Danlos diagnosis. I would avoid it like the plague, I think , but then it has got me through 261/2 years of pain. I really don’t know if I would have successfully got through all those years without it. I just don’t like it because of all the dreaming and early morning having to get yourself from the ‘dream world ‘ back into the REAL world . Bizarrely I am so active in my dream world , I am so exhausted by the time I wake up .!

These are my experiences . Listen to the experts on line . Every one reacts differently to what drugs we take . I didn’t go through anxiety , just depression. I do hope you find the answer for you to live a happy lifestyle.

[Missus835 in reply to Flutterbies57]

Thanks Flutterbies. I tried to convince the GP that this was too fast, but no go. She wants me on a SSNI which also addresses pain. It didn't help that the anxiety was rearing it's ugly head as soon as I entered the office...or maybe it did. I sleep very well so if it interrupts that, I will discontinue. I have huge anxiety over new meds so there's that. Haven't picked up the Rx yet.

[Flutterbies57 in reply to Missus835]

I sleep really well almost all the time . I sleep 12 hours , but the dreaming is intense , then when I wake it takes me a couple of hours for my head to get back into the real world. I have only spoken to one other person on them and they go through the same thing.

[Freshairfiend]

I do hope you get some respite soon, whatever path you choose. The rheumy cannot threaten you, so I would consider reporting them. And threatening to withdraw your pred is so dangerous that it is probably illegal, as it could endanger your life.

All the best.